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Cover Stories – Connor Quinn and the Swan maiden
The story of Connor and the Swan maiden follows a familiar theme in folktale and one which some might find problematic in these times of heightened awareness of the power imbalance between male and female characters in so many traditional stories.
(Although I think if we tidy up and 'correct' our traditional tales we are potentially just pretending these things never existed/don't exist, better to be aware and discuss and also look for the stories that subvert these ideas, they are out there…)
In 'Connor Quinn and the swan maiden' the protagonist manages to capture a shapeshifting Swan woman by picking up her cloak and they marry. Many Selkie stories have a similar theme, the man usually concealing the Selkies sealskin to force her to remain with him.
But Beatrice (for that is the swan maidens name) is no passive victim here, she has power and agency, she is self assured and unafraid and her marriage to Connor is a bargain she strikes on her own terms.
Beatrice could leave whenever she wanted to, her feather cloak hung in her own chamber in plain sight to all. But she chooses to stay, honour her bargain and sample the human life for a while, (including bearing children for what I suspect from the story is the first time in her long life) maybe she stays out of curiosity? perhaps to punish her sisters for fleeing so readily when she was captured? The opening paragraph of the story makes it clear that her connection with them is a very close and elemental one but she then cuts them from her life very thoroughly for a while.
Personally I think it is curiosity, she has observed humanity for millennia and is looking for new experiences and new ways of being. To me she is a powerful nature spirit, uncompromising in her desires and decisions, when Connor breaks the terms she has set out she leaves immediately, taking their two children and rejoining the sisters whom she has shunned for seven years.
Beatrice is unashamed in her nakedness, she is unashamed of everything. There was no other way she could be for me. As she emerged almost luminous from the dark background I found myself a little in love with her myself, well, a lot in love with her to be honest. I took her to be framed immediately after scanning and she now hangs at the top of my stairs to greet me every morning.
I often wonder whether the heady, erotic opening passage of this story and the feeling that perhaps I was potentially looking at Beatrice through Connors eyes were what made me develop such a passionate attachment to this piece. But this is not a male gaze here, it is my gaze. My connection with her is of a different nature I think. I would be interested to know how you respond to her as well.
She does seem able to connect with other women too, when I asked Rab Fulton for permission to reproduce her story here, this was part of his reply:
'Your illustration added so much to the Galway Bay Folk Tales Book, and it still inspires me it is so beautiful.
I recently showed your illustration to a women's group in Galway. The group is made up of a mix of Traveller and Migrant women. I work with them to help them create stories for their children and friends.Anyway i wanted them to begin talking about folk tales. I deliberately chose not to tell them the story as i wanted them to make their own story using their own ideas and experiences. Instead I showed them your illustration to start a conversation going – and they were awestruck. It was incredible how your illustration really touched something in them and ignited their imaginations. So they've been working on a new swan maiden story, which we hope to publish in 2018. If you'd like to see a draft of that, give me a shout and i'll send it on to you.'
And here is the story in full, reproduced with the kind permission of Rab Fulton from his book for the History press of Galway Bay Folk tales.
Connor Quinn and the Swan maiden
One day as the light was fading Connor Quinn walked the length of the lake of his estate. When he came to the ancient ruins of his family's ancestral home, he sat down and looked at the water stretching away from him. A gentle breeze cooled him. The sun was low on the horizon and the rippling water glowed red and gold. As he rested he saw three swans moving gently on the water. Each bird was attired in feathers as white and dazzling as midnight stars and they moved with a grace and nobility that showed their superiority to any of nature's other creations.
As the creatures drew closer to the shore Connor was touched by a deep and terrible melancholy. Compared to the perfection and contentment of the three birds his struggle for wealth and power seemed pitiful. His whole live had been dedicated to bringing renewed honour and status to his family, but suddenly he understood that his name and his history had no more importance than a speck of dust in a giant's eye or grain of sand in the hand of God. The swans, on the other hand, seemed to Connor to exist with a complete disregard to the limits of time and space.
The swans moved across the lake, drawing nearer to the shore were Connor sat. The young man wiped his eyes and carefully hid himself behind a broken wall. Sending a wish and a prayer out to the infinite he peered over the ruin and saw, to his delight, that the swans were now stepping onto to the grassy bank some thirty or forty feet away. One of the creatures nodded its heads and stretched out its great white wings. Connor was horrified to see hands suddenly sprout out from the middle of the creature. With a sickening rip the hands tore the swan open and out stepped a young woman. The swan's form was now nothing more than a beautiful cloak, which the woman folded with great care and placed on a rock at the water edge.
The two other swans likewise opened up to reveal two more women, each of whom likewise folded her robe and placed it on the rock. The three women walked away from the lake until they came to a flat piece of ground only a few yards in front of Connor. Each of the women was similar in appearance, with copper skin, thick black hair and dark eyes. Even the curve of breasts and the musculature of limbs were replicated in each of the women. The only difference seemed to be in age, and so Connor knew that the three were sisters.
Before the gaze of the astonished young man the three swan women formed a small circle, facing outwards and clasping each other hands. First they dipped and curtsied, then stood upright and stretched towards the red and purple sky. It seemed to Connor that some invisible force was connecting the three for they moved with such perfect synchronicity: when one bowed, her sisters did the same; when one bent a knee, whilst stretching her arms wide, the movement was perfectly and instantly replicated by her two companions.
Then, with a gleeful yell each released her grip and leapt forward. Mesmerized Connor watched the youngest of the sisters stomp the grass with her naked feet, then slap her hands on the naked flesh of her thighs and belly. Her sisters too were yelling and jumping in a frenzy, their skin glowing scarlet in the dying sun's light, their hair a wild raven black aurora. As they spun and screeched sweat spun off the tips of their fingers and the point of their breasts and their musky scent filled Connor's nostrils and mouth, choking him and filling him with terror and lust and white hot sparks that blazed through his groin and his gut until in a sudden rush of madness he scrambled over the rock and ran roaring towards the women.
With a yelp the maidens ran to the lake. The older two grabbed a hold of their cloaks and in an instance transformed into swans. The younger sister tripped only a few feet from the rock. She cried out for help but her two sister beat their great white wings and took flight. Connor jumped over the fallen woman and snatched her swan cloak. With that he turned and walked all the length of the lake back to his own grand house. Not once did he turn around, for he knew the young woman had no option but to follow him. When he arrived home he went into his hall and walked towards the great hearth were logs blazed and spat. Holding the cloak before the fire he turned and faced the swan maiden.
There she stood in that great hall, with its tapestries and furnishings from all the corners of the world, with a hundred candles glittering and the great oak beams overhead. There she stood naked and defenseless, but no tears spilled from her dark eyes. Instead she stood proud and wary looking first at her cloak and then directly at Connor.
'I know what you want Connor Quinn,' she said, 'And I will be your wife, your willing wife, but only if you do two things for me. You must give up gambling for it is a childish folly and I have sworn never to become the bedmate of a fool or a boy. And you must never bring a member of the O'Brien family into this house, for they are an enemy to me and mine.'
Connor rang for a servant and asked for a bible to be brought for himself and clothing for swan maiden. He swore then to keep his side of the bargain and smiled as he made his pledge. Gambling was a pastime he good easily forgo, and the O'Brien family and Connor's family had for many centuries been the bitterest of foes and none had ever stepped a foot into the others dwelling.
So it was that Connor married the swan maiden. After they were wed Connor gave his wife her own chamber that opened onto the great hall. It was only then that she let him know her human name, Beatrice. The chamber contained everything a woman would need for comfort; a great bed, soft chairs, a box of sewing material, a rope to summon a servant at any time of the day or night. There was a large window that looked over the lake, and hanging from a hook on the wall was the beautiful swan cloak. Connor kept to his side of the bargain and his wife to hers and the cloak remained untouched as the months and the years went by.
Many sages have written and sang and extolled the innumerable virtues that go toward making a marriage successful. None though have ever mentioned the benefits of mistrust and uncertainty. Yet it was these two attributes that helped bring closeness between Connor and his wife. Having committed to sharing a life together they both were not sure what to do next. In the weeks following their wedding they kept a resentful distance from the other. Each assigned malign motives and desires to the other that with every day became blacker in the imagination. When finally they confronted each other it was only to discover that their fears lacked any foundation.
From that moment they both were more careful and attentive of the other's needs. One morning Connor came into the hall to find his table had not been set for breakfast. A servant was called for and an explanation demanded. 'The mistress of the house asked that we lay the Master's meal out in her chamber' explained the serving girl.
Connor went into his wife's chamber. There they both sat facing each other, a small table between them. They ate a little; they drank a little, and said not a word during the meal. With the meal over Connor attempted to break the uncomfortable silence.
'If you wish, I could have food put out by the lake for your two sisters.'
'That pair, they've food enough. What they need is a stick across their backs.'
'Why?'
'You know why. When I needed them most they fled.'
'Would you rather return to them?'
'Oh Connor, do you want rid of me now?'
'No. But I would not have it said that I forced you to live a life filled with sorrow.'
'And I would not have it said that I broke a pledge.'
'So you will stay.'
'I will.'
'In which case,' declared Connor with a grin, 'I will get a stout stick to teach your sisters a lesson.'
Beatrice smiled and shook her head. 'Oh dear husband, I pity the man who ever tried to hurt me or mine.' She put her hand on his. Her skin was soft and her grip firm. She kissed Connor on the cheek. 'If you are free this evening, perhaps you would care to join me for supper.' Sparks shot through Connor's belly, and he laughed at his fortune and his folly. 'Maybe,' he said and kissed his wife's hand.
A year after they were wed husband and wife were sat at the breakfast table. The previous twelve months had seen a change in Connor's fortune. Investments yielded stunning returns, merchants up in Galway City begged his patronage, powerful men took account of his views on the great politics of the state. Good fortune seeped into the very soil he walked on and the air that he breathed. His lake was packed with large and sweet tasting fish, the trees appeared wider and their foliage thicker. There was less sickness amongst his tenants and none could recall when last his crops had been bigger and more abundant.
'Who knows,' said Connor, ' maybe one day I could regain all the land my family once controlled here in Munster and up in Connacht. It would only be fitting; Queen Medb was my ancestor after all.'
'That would explain your nose,' said Beatrice. 'I thought I had seen it's like before.'
'Dear wife, you must be very distracted. Queen Medb lived a thousand years ago.'
'Was it that long ago? How strange.'
Connor took a bite of meat. His wife frowned, looked at her husband.
'Husband, I have unexpected news that terrifies me almost as much as it fills me with joy. I have a child in my belly.'
The birth, when it came six months later, was a long and agonizing enterprise. After twelve hours a trembling serving girl was sent with a message to Connor as he paced the great hall. 'The mistress fears she is dying, and begs you give her a good and Christian burial.'
'Can I see her? Should I call for her sisters?'
The serving girl curtsied and returned into the mistress's chamber. The door had no sooner shut than a shriek of pain and rage resounded through the building. The serving girl stepped back into the hall. 'Begging your pardon Master, but the Mistress says that you need not attend to her yet, nor send for her sisters.'
'What were her exact words,' demanded Connor? The girl's face reddened and she shook like the final leaf on a tree in an autumn storm.
'Come,' said Connor gently, 'a penny for an honest answer.'
'Well, begging your pardon master but the mistress only shook her head when I asked if you could see her. When I mentioned calling for her sisters, her reply was more loud and fulsome.'
'Her exact words please.'
'To be exact she said "My sisters can go to hell, and take the fool that dares consider inviting them."' Quickly the girl added; 'The midwife asked me to say that the mistress's response shows her strength and resilience.'
Connor laughed in relief and handed the girl a coin.
Beatrice endured ten more hours of pain, stabbing like a blade into womb as her body pushed and kneaded life into the child. Ten hours she suffered as none of her kind had ever suffered before. Ten hours of arduous agonizing journeying into motherhood and womanhood, with death and life alike attending her, each offering peace or punishment as the mood took them. At last a final scarlet stab between her legs and suddenly Beatrice was free of weight and of worry, as the wailing child was placed on her sweat soaked breast. 'Tell me husband he has a son.'
It is a rare achievement to balance ambition and contentment, yet for seven years Connor manage to do precisely that. Eighteen months after the birth of his son, Beatrice bore him a daughter. Now Connor had a child to inherit his estate and a child to offer in political marriage. Yet political calculation did not blunt the affection Connor felt for Beatrice and his children. As his income grew, so the great hall filled with the sound of merriment as the children crawled, walked and ran circles around parents and servants.
During summer the family walked the length of lake, taking food and drink to the ancient ruins. At first Connor was afraid to return to those ancient stones. 'It is important,' explained Beatrice, 'that we make that spot ours. My sisters must understand they have no ownership over any of this land. It belongs to you, my husband, and you alone.'
The swans were seen on the first family expidition. They floated on the waters white and magnificent, paralleling the progress of the little group. The oldest child had stopped to look at them. They stopped too, to stare at him with their black eyes. Beatrice had grabbed the boy's shoulder and hissed at the birds. They flapped their wings and took flight. That was the last time they disturbed the family picnic.
No matter how many times they visited the broken ruins, Connor always began the picnic with the same words. 'Here is where I first met your mother,' he would explain to his children. 'She was dancing.' Each time he said this he sounded astonished as if only realizing for the first time how blessed he was. Beatrice, for her part, would grasp her husband's hand and laugh, 'Oh, grá mo chroí.'
Exactly seven years after he had first saw his future wife dancing with her sisters on the banks of the lake Connor kissed Beatrice and his children and promised to bring them a little something when he returned in a few days time. It was the season for horse racing, a time when the powerful meet to shake hands, slap backs, cut deals and quietly or boldly – depending on the disposition of the men involved – shape the politic and commerce of the land. Connor never missed a festival and though he never enjoyed a flutter he sponsored a number of celebrated races.
As well as the sports on and off the racetrack a racing festival was (and is to this day) the arena in which all men, from the meanest labourer to the wealthiest banker, could observe whose influence was waxing fat and full and whose influence was on the wane.Connor's prestige was clearly on the rise; he was a figure to be observed, pointed at, and, if lucky, win a shake of the hand from. With the last of the day's meetings finished the great men of the west retired to a tavern, to eat, drink and assess what hand Fortune dealt to each of the day's players. Connor's successes that day included an amiable discussion about the sacred and societal importance of marriage with Mayor Lynch of Galway, who after many childless years had recently been blessed with a son. Connor ate well and drank deep.
As the night wore on ever more men packed into the tavern. Candles sputtered and smeared the hot gloom with a thin and smoky light. The air was thick with the reek of horses and earth, of onions and stewed meat. The festive banter was punctuated with laughter and shouts and the occasional thumping of the table. In the midst of all this a cheery voice called out 'Is Connor Quinn so elevated above us he cannot enjoy a bet on the horses like all us mortal men.' To which Connor replied equally merry, 'A drink for that man to dip his tongue in.' But his heckler was not satisfied with the tankard that was placed in front of him.
'In all seriousness Connor Quinn, your behavior is troubling. If the greater can't spare a coin on chance why should the lesser. If we all followed your example no risks would ever be taken. Nothing ventured as they say and nothing gained. Soon it would all be stagnation from Ballyhannon to Belmullet.'
'Of I have taken many a risk in my life and made many a gain as many of these gentlemen will testify. I have more than enough coin and would not take the chance for gain away from others. Indeed happy as I am in life I now extend a drink to everyone in this fine place!'
'And doubtless you would ask us all to raise a glass to health and happiness of you and your good estate.'
'Not at all. I need no more joy and wellbeing. As for my estate, how could it b e any better. The trees on my land are bigger than houses. So many fish are packed into my lake that you could walk across their backs and never wet the soles of your feet. My home is filled with tapestries from the Indus and beyond, and furnishing inlaid with gold and ivory. My son is as handsome as a prince, my daughter as happy as a princess, and my wife as good and as fair as an angel from heaven.'
The stranger stood up with a suddenness that knocked his fellow imbibers sideways. 'Gentleman, listen to the great Connor Quinn. The way he talks you would think he was one with God and our savior. Maybe he should be given an ould bit of mackerel to turn it into a feast for thousands. Or perhaps we could ask him to turn a basin of dishwater into a casket of finest Spanish wine.'
No one laughed. Not a voice was raised in agreement or dissent. Every man there, from the labourer to the overseas trader, remained silent as Connor stood up and carefully gave his reply. 'Stranger, if you are as honest a man as you are foul mouthed, you will come to my estate now and see for yourself that I spoke the truth. You will then return to this place and tell these gentlemen that every word I spoke was free of falsehood and exaggeration.'
'I accept the challenge. What's more I will add another round of drinks for these good witnesses.' With that the stranger took out a purse and spilled gold coin on to a plate. 'This should keep everyone in good form until I return.'
Connor and the stranger got up on their horses. As they galloped across the country, trees grabbed at their hats, and hedgerows at their boots. Above them the moon and stars shook and shone as white and bright as swan feathers. It was only when they arrived at Connor's estate that the two riders allowed their creatures some rest. Trotting along a laneway, Connor gestured to the trees on either side. 'Big as houses, as I said. And look over there, observe the lake. You can see the backs of the fish glinting in the moonlight.'
When they came to the great home, Connor invited the stranger to lay a hand on the stonework and take a look at the turrets and carved figures leering down from above. 'It would take a morning to walk around this building, and a hundred years of to knock it down.' The stranger nodded but said not a word.
Inside, Connor showed the stranger his great furnishings inlaid with precious metals and jewels, the tapestries from the furthest corners of the known world, the hearth open like a vast mouth in which a great yellow and red flame licked and lolled 'The fire and the candles are always lit, no matter the hour or the season,' boasted Connor Quinn. The stranger nodded and finally spoke.
'I admit to being impressed. You spoke the truth my friend.'
Connor gestured to the two chairs by the fire. Between the chairs was a small ornate table, on which Connor placed two glasses and a decanter of whiskey. 'I am glad to win your approval; you will of course transmit your opinions to the witnesses.'
'Of course,' said the stranger with a smile. 'I give my word as a high ranking member of the ancient and noble O'Brien family.'
Connor trembled with dread. He tried to speak but his mouth was dry and his tongue swollen and heavy. Unable to breathe he yet forced himself to fill the glasses. With the taste of the whiskey he snapped back into a semblance of composure. Another drink was poured. With a merry 'Slainte!' Connor clinked his glass against O'Brien's. All was not lost, his wife and his children were asleep in their chamber. He need only remove his unwelcome guest as quickly as possible and all would be well.
'It is well that an O'Brien has visited my home. Our families have spilled too much blood and anger over the centuries. Let us drink to our mutual good fortune and continuing prosperity. Let us also commit ourselves to meeting again at a more hospitable hour.'
Connor stood but the O'Brien remained in his chair. He stretched out his legs, took a sip of his whiskey, gazed at the fire. Finally he turned to look up at Connor. 'Well I guess I should take my leave now. There is a tavern filled with gentlemen who are awaiting my honest assessment of your possessions. I will, on my word as a gentlemen and an O'Brien, tell them that everything you said was true. That your trees are as big as houses; your lake packed with fish a man could walk across the backs of. I will tell them about your rich furnishings and delightful tapestries. I will tell them about the blaze in your hearth and the glitter of your candles. But I will also make sure to tell them, on my word as a gentleman and an O'Brien, that yours Connor Quinn is the worse hospitality in the whole of Ireland. Never before has my mouth suffered such a brief acquaintance with another man's uisce beatha.'
Connor sat down again. A true gentleman, he would rather a knife in the belly than such an indictment. Wounds can be recovered from and scars displayed with pride, but a reputation for frugalness in a host is an injury as evil as it is fatal. 'Ah now O'Brien, you need only have said that you had time enough for a proper welcoming. There is more whiskey in the cabinet over there and some cheese and fruit, though it would be my pleasure to wake the kitchen and have a more substantive supper prepared.'
'Whiskey and cheese sounds a grand enough supper. Go raibh maith agat.'
The two men ate and drank and drank and ate. Connor kept his voice low and was grateful when the O'Brien follow his example. The whiskey, as whiskey does, induced a conviviality between the two men. Connor wondered why he had not met his guest before, and his guest explained that he had been raised in the court of England. 'I have returned to oversee my family's commission to control piracy in Galway Bay. My approach is more one of regulation that eradication. But even in England I heard news of your own improved standing in life. What is the secret to your success'
'A good and loving marraige,' declared Connor. 'Ni ceart go cur le cheile!'
O'Brien raised his glass in agreement, 'It is very true. Only unity bring strength. But I see you glancing towards that door there. Is that where your wife rests.'
'My wife and my two children.'
'Well,' whispered the O'Brien. 'Let's finish the evening soon, and finish it as strong friends.' He took a packet of cards from his pocket. 'Let us play a quiet game Connor Quinn, before I go out to tell the world of your honesty and good fortune?'
The guest dealt the cards and the host happily picked up his hand. They play in silence, the only sound in the vastness of the hall the slurp of lips imbibing, the clink of glasses touching, the sigh and snap of cards playing. Connor won a couple of hands; the O'brien likewise. After a while the O'Brien spoke softly. 'What is a game between friends without a little flutter…?' Connor agreed and the game began in earnest.
Both gentlemen remained polite and outwardly affable, but it the game had changed into a competition as savage as any battle or politicking. At first the men were equally matched in intellect stamina, but as the whiskey brought weariness and confusion to Connor, the O'Brien became ever more focused and full of vitality. The hours crawled by as Connor first lost his wealth, then his land, then his beautiful furnishings and tapestries. In a last desperate bid to win it all back Connor lost his grand house.
The O'Brien sat back in his chair and raised a glass to his stupefied opponent. Connor was numbed and shocked at the massive and utter reversal of his fortune. When he heard a door slam he leapt up in terror, grabbed a hold of the O'Brien and dragged him across the hall. 'To hell with hospitality!' he roared and threw his enemy out into the cold pre-dawn darkness.
He walked back into the hall, placed a hand on the door of his wife chamber. A great fearful melancholy echoed through his belly and heart. Wiping away tears he opened the door.
His wife was standing by the open window. Outside the sky was grey and purple. The two children stood in front of their mother. Behind Beatrice stood two woman with feathery capes draped over their shoulders. Connor reached out to his wife, but one of her sisters opened her mouth in a wide terrible grimace and hissed. The other sister took the swan robe from the hook it had rested on untouched for seven years. She placed it on Beatrice's shoulders. 'You have no more hold on me,' wept Connor's wife. Before his eyes she and her sisters began to mutate into great white birds. As Beatrice's arms transformed into wings she touch her children and they two began to change.
One by one the five creatures leapt up to the window and flew off into the blood red sky of the new morning. And that was the very final ruin of Connor Quinn.
August 1, 2018 August 1, 2018 KatSoutar 1 Comment
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Ships of the Desert – part 1 →


The Florida Fire Frogs' offense struggled to figure out Fort Myers Miracle pitching on Wednesday night, as the Atlanta Braves Advanced-A affiliate fell 9-0 for their first shutout defeat of 2018.
Jeremy Walker (0-1) worked a quick, 11-pitch first inning, but ran into trouble in the second, as the right-hander yielded six runs on six hits.
Jaylin Davis started the frame with an infield single for Fort Myers (4-3), and reached second on a groundout off the bat of Nelson Molina. Walker walked Jared Foster to put runners on first and second, and allowed an infield single to Alex Perez to load the bases.
Brandon Lopez bounced out to third, plating Davis and getting Walker an out away from escaping the inning with minimal damage, but Jimmy Kerrigan launched his second home run of the series to put the Fire Frogs in a 4-0 hole.
Mitchell Kranson kept the line moving with a single, and scored on Caleb Hamilton's double to left to put the visitors behind by five Travis Blankenhorn singled home Hamilton to end the night for the Fire Frogs' starter.
Chad Sobotka came in to relieve Walker, and retired Davis on a grounder to third to finish the second.
The tall right-hander worked a perfect fourth and fifth innings to set down all seven batters he faced.
The Miracle used a two-out rally in the sixth to tack on three more runs in the sixth against Chase Whitley to extend the deficit for the Fire Frogs to nine.
Anthony Marzi (1-0) earned his first win of the season for Fort Myers. The 25-year-old blanked Florida over 6.1 innings, giving up four hits and striking out five.
Cristian Pache (2×4, 2B) and Alejandro Salazar (2×3) had two hits apiece to produce four of the Fire Frogs' five hits.
The Fire Frogs will look to split the series in the finale of the four-game set of Thursday night at Hammond Stadium. LHP Tucker Davidson (0-1, 5.40) works for Florida against Fort Myers' RHP Tyler Wells (0-0, 2.25). First pitch is set for 7:00 p.m.
Florida returns to Osceola County Stadium for a seven-game homestand beginning Tuesday, April 17 against the St. Lucie Mets and Lakeland Flying Tigers. The seven games feature Los Coquis Night on April 19, and Superhero Night on April 21.


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Take a look at what Janika had to say during her interview.
1. How old were you when you had your most recent child? 1st child?
2- How would you define "fly"?
I define "fly" as unapologetically unique. A person who is comfortable in their confidence and in their swag persona.
3. Besides your child(ren), what inspires you to remain fly?
Naysayers and critics of older women and moms. I'm inspired by those who think that because you've arrived at a certain age that you automatically let yourself fall off. Child bye!
4. How do you feel having had a baby after hitting 35?
I had no ill feelings about having a baby after 35. I knew how fertile I was so I was good on that. I got married when I was 38 years old & conceive two years later. I did have problems though because right before we got pregnant with the baby that I have now, we went through two miscarriages within a 90-day period. The very first loss hit me really really hard and I didn't know if I wanted to try again. But everything eventually worked out and I became pregnant with Royal.
5. How would you classify your style.
I classify my style as "Whatever Looks Good On Me Couture"… I get everything from thrift stores, Goodwill, and Citi Trends…. I'll take a cheap outfit and make it look like a million dollars Honeychild, and will saunter into a room like I paid a bunch of money for it too….
6. What makes you fly? When do you feel the flyest?
What makes me fly is my ability to continue to put myself out there to tackle new goals, even though I'm 42 years old, newly divorced with three children. I'm still setting goals and putting myself out there…… In the midst of the competition of millennials, and societal standards that they say I'm too old and what have you, I continue to put myself out there….. Speaking what I seek until I'm seeing what I say…..
7. What would you tell another mom to help her regain her formerly fly self, whom had let it go due to motherhood?
Give yourself permission to press the "reset" button. Give yourself permission to press the "reinvent" button. Give yourself permission to press the "change your mind" button, give yourself permission to press the "f#$& what anybody else thinks" button…. And most importantly give yourself permission to press the "fly reappear" button because just because you're "Fly" was on pause does not mean that it has disappeared…. And that's okay because life happens we just have to do some some self-reflection, change some things around a bit and move forward from there. It can be done. It's a process but it can be done…..


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Strategic Planning That Enhances Your Culture
Your strategic planning process is a major opportunity to enhance your organizational culture, which brings many ancillary benefits.
By Stuart Levine | April 04, 2019 at 12:50 PM
CU executive strategizes for the future.
Credit unions need every edge to compete in today's world of rapidly-changing technology, regulation and economic dislocation. Your strategic plan, an essential tool to address this level of change, can also give you an advantage in ways you may not have realized. Your strategic planning process is a major opportunity to enhance your organizational culture, which brings a wealth of ancillary benefits. A culture of engagement forms a basis for organizational success, as an engaged workforce produces increased member satisfaction and higher financial returns. A planning process that relies on candor and inclusion generates engagement.
Complete and accurate information is indispensable to any planning exercise. Having data gathered, by an independent source in a confident manner, from a sample representative of the workforce and senior leadership, creates a foundation for the strategic plan. When the data gathering process is inclusive, it enhances the trust that is fundamental for a healthy culture. Participants take time to share honest critical thinking. Everyone knows their input matters and their voices will be heard. This level of inclusion generates enthusiasm and motivates people to create a shared plan and strive to achieve its goals.
Prioritizing Member Financial Health During a Recession
Tony Salamone | January 20, 2023
Now more than ever, it is important for CUs to prioritize guiding their members toward healthy financial tools and habits.
5 Steps to Leading With Purpose
Mike Valentine | January 20, 2023
Purpose is at the forefront of consumer-brand relationships and helps employees focus on the bigger picture.
Our Members Need Help Navigating 2023
Richard Waddle | January 27, 2023
Gesa Credit Union's EVP discusses how CUs can successfully educate their members on money.

redpajama_set_name: RedPajamaCommonCrawl


text:
all: run

run:

debug:

clean:

test:
	node test/all.js

.PHONY: all clean run debug test

redpajama_set_name: RedPajamaGithub


Tonight's guest, Dee Sims, used to laugh when people talked about seeing a Sasquatch. To her, the existence of Sasquatch was a total joke. That all changed one night when she attended a Sasquatch expedition, in Honobia, Oklahoma. That night, she found out they're no myth. That wasn't the only experience Dee's had with Sasquatch, though. Tune into tonight's show to hear Dee talk about more than one experience she's had with them.


Wisdom of Life.: Are you a gentleman to ladies?
I am glad my good friend, Fariza has finally found her ideal partner, a Caucasian and not a Malaysian. She had married once, many lovers and all are local males. Not one could really make her happy in love. Until she brought up her courage to fall in love with a foreigner who is of different culture and faith.
I agreed with Fariza, most of our men here are not true gentlemen. In the first place, we are not as romantic as what we claimed. Perhaps romantic to us might be just the few moment on bed and after that, we lost the loving care and attention towards our ladies in attendance. Can't blame our women, they are afraid to fall in love with the courting men, who are inconsiderate!
The other weaknesses i personally observed, most of us are arrogance with high ego, especially after falling in love with their ladies. We are selfish and ungenerous, especially on financial matters. Go to the restaurants and observe yourself. Over at the cashier counter, you would notice all bills are shared by their friends. The male has no courtesy to pay for the females, unless he has benefit over the companies. Sometimes even young lovers insist to share their expenses, for every single cent counts. We have not learned the pride to pay for another friend, more so for females. Thanks God! I never allow ladies to pay whenever they are with me.
On tipping! We are really bad. We expect high and efficient services but we shy away on tipping. Not only are the men, the ladies are equally the same. I hope my little darling has learned to tip and appreciate those who rendered service to her. Unless we, the males are prepared to change our attitude and approach, we wound never be considered as true gentleman like this Caucasian.
Most important, i hope...i had been a gentleman to you too when you were here last.


First L. F. Leason Learn manoeuvres clumsily with second lining of the brakes mo in anag.
VHC A. J. Crow Merry role-man of Sherwood? anag.
VHC E. R. Evans Traduisez le roman forestier en anglais anag.
VHC Mrs B. Lewis Bosky, renders 'Ole Man R' off-key anag.
VHC D. McCallum If otherwise, no realm of dryads anag.
VHC C. J. Morse Shooting men have spoken of a wood or an elm covert men (rev.) + oral and anag.


We currently have 133 in stock.
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organic and free of toxins.


How durable is the iPhone 7?
Mere hours after the release of the iPhone 7, someone has already tried their best to destroy it with knives and brute force - but the best bit is the tech torture session has been uploaded for YouTube for us all to see.
YouTube channel JerryRigEverything revealed its durability test of the new iPhone 7 where it manages to bend the phone by brute force.
The good news is the iPhone 7 doesn't seem to bend as easily as it did on the iPhone 6 - which suffered the bendgate controversy - but if you want to bend your phone, you'll be able to.
That's likely not going to be an issue for you though - you're never going to try to bend your phone like the presenter does in this video.
In terms of scratching, the iPhone 7 held up well to keys. So it should hold up well in your pocket thanks to the anodizing process.
Scratching the phone with a utility knife did a lot of damage the video though - but again, it's not something you're going to do at home.
The YouTube channel also claims there's no sapphire lens cover on the iPhone 7 rear camera, despite Apple noting it features one in the spec list on its website.
A common razor blade doesn't harm the lens in the test, but another pick used by the channel shouldn't damage a sapphire lens cover like it does in the video.
Maybe Apple's sapphire lens cover on the iPhone 7 isn't up to scratch or JerryRigEverything's claim is false - just be certain to look after your camera lens if you buy an iPhone 7.


More action from Lumpinee Stadium in Bangkok, Thailand. Petsitong Sor. Sawanggym (in red trunks)Vs Thirapon Sor. Thirapon (in blue trunks) from Lumpinee Stadium on Saturday night, February 6, 2010. Ths fight was contested at 121 lbs.
~ by fatsoking on July 7, 2010.


text:
Marki () is a rural locality (a selo) and the administrative center of Markovskoye Rural Settlement, Kamensky District, Voronezh Oblast, Russia. The population was 1,002 as of 2010. There are 7 streets.

Geography
Marki is located 24 km northeast of Kamenka (the district's administrative centre) by road. Kozki is the nearest rural locality.

References

Rural localities in Kamensky District, Voronezh Oblast

redpajama_set_name: RedPajamaWikipedia


text:
Picturing Black History
Photographs and stories that changed the world
About Black History
A Collaboration of
Busing and School Segregation
White people raged against school busing in Louisville, KY (September 1975)
By Kevin Boyle
Photo by Bettmann Collection/Getty Images
The integration of Louisville's public schools began smoothly enough, all things considered. Attendance was half what it ought to have been on the first day of classes, thanks to a white parents' boycott and a great deal of fear. Eight of the district's 165 schools were evacuated because of bomb threats. And the police arrested a white kid for throwing stones at the Black kids at Fairdale High on the district's seething south side.
But there weren't any large-scale incidents around the buses or out in the streets, as many people had feared there might be. In September 1975 that counted as a victory.
It had been 21 years since the National Association for the Advancement of Colored People (NAACP) had convinced the Supreme Court to declare the legislated segregation of public schools unconstitutional. Prohibiting segregation was one thing, though; integration was decidedly another.
For more than a decade after the Court's decision, districts could bring themselves into compliance by allowing a single Black child, like little Ruby Bridges, into their otherwise completely white schools. Only in May 1968 did the justices decide—in another NAACP case—that it was time to bar legally segregated systems altogether and to put in their place genuine integration.
What followed was arguably the most radical turn of the civil rights revolution. Across the country NAACP lawyers and their legal allies filed suit to force districts to comply with the Court's new ruling. The only way to do that, they argued, was to move a substantial portion of white children into Black schools and Black children into white schools, until their color lines were obliterated.
In the largest districts the numbers were startling: to integrate the Los Angeles school system, the NAACP proposed busing 250,000 kids a day, white kids in one direction, Black kids in another. The protests that brought down Jim Crow in the mid-1960s had been more dramatic, the recent demonstrations of Black Power more startling to white America. But never before had the civil rights movement tried to place the weight of racial change so directly onto millions of white families.
White Americans responded with countersuits, petition drives, recall campaigns, and protest marches meant to mimic the ones the civil rights movement had staged in its glory days.
When those tactics failed and the buses started to run in district after district, a striking share of white people turned to massive resistance, part of the larger efforts of segregationists to resist federal integration law. Busing defiance began in the Deep South in 1970-71, then followed the courts' rulings north to its furious peak in blue-collar Boston in 1974-75, busing's most brutal school year yet with widespread rioting and violence.
Louisville's turn came on Friday, September 5, 1975, the second day of the academic year. There were flashes of violence in the morning as the buses pulled into the south side high schools; worse when classes let out that afternoon and knots of white people took to pelting the buses with rocks and bottles.
From there the crowds swelled—drawn in by Friday football—until by nightfall 1,000 people had gathered around Southern High and maybe ten times that number at Valley High, out on the southwest side's Dixie Highway. The rioting started shortly thereafter in a paroxysm of white rage: mobs on the highway stoning cars; mobs on the business strips smashing store windows; mobs in the school parking lots burning buses; mobs brawling with the police.
The next morning the governor ordered in the National Guard. The mayor put in place a ban on anti-busing protests. And the local authorities announced that come Monday each of the district's buses would have a policeman aboard.
This photo was taken a few days later, as the Black students at one of the south side schools boarded the buses that would take them home. By then the crowds around the high schools had been cleared away. The bomb threats had stopped. Even the boycott was fading, eighty percent of white parents having decided that they'd send their kids to school after all.
And the heaviest burden of integration had been pushed back onto the thousands of Black children whose route to and from school now came with an armed escort for fear of what white people might do.
The Bettmann Archive
© 2021 This project is a collaboration of Getty Images and Origins: Current Events in Historical Perspective.
230 Annie and John Glenn Avenue, Columbus, OH 43210


text:
namespace NetEscapades.AspNetCore.SecurityHeaders.Headers.ContentSecurityPolicy
{
    /// <summary>
    /// The style-src directive specifies valid sources for sources for stylesheets.
    /// </summary>
    public class StyleSourceDirectiveBuilder : CspDirectiveBuilder
    {
        /// <summary>
        /// Initializes a new instance of the <see cref="StyleSourceDirectiveBuilder"/> class.
        /// </summary>
        public StyleSourceDirectiveBuilder() : base("style-src")
        {
        }

        /// <summary>
        /// Requires a sample of the violating code to be included in the violation report
        /// </summary>
        /// <returns>The CSP builder for method chaining</returns>
        public StyleSourceDirectiveBuilder ReportSample()
        {
            Sources.Add("'report-sample'");
            return this;
        }

        /// <summary>
        /// Allow sources for content generated using the the HashTagHelper.
        /// </summary>
        /// <returns>The CSP builder for method chaining</returns>
        public StyleSourceDirectiveBuilder WithHashTagHelper()
        {
            // TODO: check hash algorithm is one of expected values
            SourceBuilders.Add(ctx =>
            {
                return string.Join(" ", ctx.GetStyleCSPHashes());
            });
            return this;
        }
    }
}


text:
Om 7 flickor är en svensk dramafilm från 1973 i regi av Carl-Johan Seth och Hans Dahlberg.

Om filmen
Filmen premiärvisades 17 december 1973 på biograf  Spegeln i Stockholm. Den spelades in på Viggbyholmsskolan av Petter Davidson. Som förlaga har man Carl-Johan Seths bok Ja skiter i varenda jävla pundhuve som utgavs under pseudonymen Erik Torstensson 1970. Seth dramatiserade själv boken till pjäsen Om 7 flickor som uruppfördes på Dramatens lilla scen 1971.

Roller i urval
Bergljót Árnadóttir - Marie-Louise "Maria" Thörngren
Lena Brogren - Nillan, vårdare
Agneta Ehrensvärd - Åsa
Stig Ossian Ericson - Stenson
Roland Hedlund - Gustav, övertillsyningsman
Folke Hjort - Svegås, vårdare
Jan Koldenius - Sven, vårdare
Åsa Melldahl - Elsa
Ann Sofi Nilsson - Gun
Lise-Lotte Nilsson - Barbro
Gunilla Nyroos - Maj
Eva Kristin Tangen - Gudrun
Kjell Bergqvist - kille tillsammans med Maj
Jan Jönson - kille tillsammans med Maj

Filmmusik i urval
Sångerna i filmen framförs av Tommy Körberg
Här har du ditt liv, kompositör Erik Nordgren
Romance in Paris, kompositör Daniel J White
Min soldat, kompositör och text Jokern
If I Had the Power, kompositör och text Gösta Wälivaara
No Can Do, kompositör Nat Simon, text Charlie Tobias
Snövit och de 7 dvärgarna, kompositör Berndt Egerbladh, text Karin Ljungman
Om 7 flickor, kompositör Lars Färnlöf, text Lars Bagge

Referenser

Externa länkar

Filmer 1973
Svenska dramafilmer
Svenska filmer baserade på böcker
Svenska 1970-talsfilmer


"Night Shanghai" is a very felicitous name to describe the nightlife of Shanghai. The amalgamation of lighting and neon, as well as the bustling traffics and passerby are the characteristic of shanghai nightlife. The nightlife is a scene of Crystal's amativeness.
As a common understanding, Shanghai has the most colorful night life in China, but if you have ever participated, you may feel it is probably the most colorful one in the world!
A great place to do some people watching in Shanghai at night is the Huangpu Park and the Bund. The bund has been a symbol of Shanghai for hundreds of years and is a popular destination for tourists. Walking along the Bund at night is a fascinating site, as the entire Pu Dong skyline is illuminated, including the Oriental Pearl TV tower and the 2nd tallest building in the world-Jin Mao Tower.
Cultural enthusiast can find in Shanghai large-scale performances of acrobatics, musicals, opera, dance, theatre, and classical and contemporary music.
Nightclubs and bars are blooming and can be found everywhere. Xin Tian Di offers the most choice and favorable appreciation. It collects international galleries, fashion shops, themed restaurants, coffee house and bars. The arrival of more and more boutiques, designer shops and luxury goods stores continually adds to the enjoyment of Xin Tian Di.
Nanjing Road is considered to be the "No.1 commercial street in China". Here along its 5.5 kilometers (3.4 miles). You will find over 600 shops that on average are visited by some 1.7 million people each day. If you like shopping, do not miss it.
Tea Houses in Shanghai open 24 hours a day. Apart from enjoying a lone taste of tea, you can invite several friends and play or just chat. Once you are here, you can experience all this for yourself. Fashionable entertainments are favorites with young people. When night falls, Shanghai bathes in the light of various entertainment venues. Nightclubs, Karaoke, Discos, Bars and Coffee houses are all popular at night time meeting places.
The Bund is a must see when watching in Shanghai at night. The Bund concentrates almost all of the beauty of the shades in Shanghai, attracting agminate folks to enjoy the night. Many tourists are attracted by its illuminated night scene.
Shanghai Xin Tian Di has many visitors. If you are visiting Shanghai for the first time, it is much safe to go Xin Tian Di for the nightlife. Xin Tian Di, the most fashionable area cultivated in the distinctive Shikumen Buildings. However, every building has a modern interior and its unique bares, shops and restaurants are more and more popular with the tourists.
Fu Xing Park is another area for nightlife, which is also a recreational park. The only time Fu Xing Park feels hectic is between midnight and 04:00 am, and Park 97 inside the Fu Xing Park is reviewed as the most beautiful bar in Shanghai by public.
As the most famous Pedestrian Street of Shanghai, Nanjing Road collects most hundreds of Modernize commercial Mansions, China's time-honored shops and specialties stores, where it is possible to pick up a bargain or enjoy a tasty morsel to eat.
When the shops in Nanjing Road are closed, the tea house really come into their own and the night is still young. The tea house here opens for 24 hours. You can enjoy the quiet here or invited several friends to have a chat.
Acrobatics is an interactive art. Every body, young or old, educated or not, can easily appreciate. Without language and culture barrier, you certainly feel the influx of adrenaline in your flood. Watch and experience the professional acrobatic group do really unforgettable show to your amazement and satisfaction.


Description Papers of John Steele, Rowan Co. Federalist, legislator, and congressman (1790-1792), including letters from his mother, especially about the British in Salisbury, Feb., 1781. Other letters describe work on Cherokee boundary as commissioner of Indian affairs, 1788-1789, and activities as major general in militia, 1794. Many documents concern Steele as comptroller of the U.S. treasury (1796-1802), including draft opinions on fiscal policies and his correspondence with Albert Gallatin and Thomas Jefferson. Other material relates to his work on the North Carolina boundaries with South Carolina and Georgia (1805-1813) and work as agent for Bank of Cape Fear in Salisbury (1808-1810). Political correspondence concerns Jefferson's measures for economy in government, Jay's treaty, Madison's foreign policies, and in 1812 the prospects of the peace party in the state and effect of party spirit on the electoral college. Nonpolitical items include land grants (1782, 1799); papers from lawsuit in which Steele represented Richard Dobbs Spaight, Sr. (1790-1796); letters concerning plantation, slaves, horse breeding, racing, Salisbury Jockey Club (1811); and estate papers (1817) and his widow's accounts. Also in collection is copy by clerk of court of Camden Co. inventories of estates, 1777-1780. Correspondents include William Blount, William Boylan, William R. Davie, Jesse Franklin, John Haywood, James Iredell, James Madison, Francis X. Martin, Alfred Moore, William Polk, Benjamin Smith, Montfort Stokes, and David Stone. The letters mounted in volumes have been published in H. M. Wagstaff (ed.), The Papers of John Steele, 2 vols. (Raleigh, 1924). Other John Steele papers are in the Southern Historical Collection, UNC.


Michael was born in Pennsylvania, and worked for CIGNA Property and Casualty Company for 40 years, where he attained the title of Assistant Vice President. As a result of transfers by CIGNA, he lived in Michigan, Maryland, and Pennsylvania. He earned a Bachelor of Science degree in Business Education and an MBA degree. His wife, Sue, is a Registered Nurse and was employed by the Commonwealth of Pennsylvania for 27 years. Michael and Sue have two daughters and three grandchildren. Michael is also a Lifetime Member of the Hardeeville Masonic Lodge.


text:
GritLit: An Evening of Poetry with Patrick Friesen, Adam Getty and Oana Avasilichioaei*
Submitted by clelia on February 23, 2009 - 8:27pm
Thursday, April 2, 2009 - 7:30pm
Art Gallery of Hamilton
Partnered with the Hamilton Poetry Centre. Authors Patrick Friesen, Adam Getty and Oana Avasilichioaei will be reading at the Art Gallery of Hamilton, 123 King Street West, Hamilton, on April 2 at 7:30 for GritLit, Hamilton's Literary Festival. Tickets are $5.
www.gritlit.ca.
authorblogs
Copyright © 2007-2014 Open Book: Toronto. All rights reserved. Site built by The Intelligent Machines Co-operative.


text:
Opera is working on a subscription-based storefront for apps
Latest in App store
A Redditor got Stadia to run on an iPhone
'Fortnite' players on Apple devices will be locked out of the new season
India has banned TikTok, WeChat and many other Chinese apps
Pandora's Apple Watch app will soon stream music without an iPhone
For entertainment services such as Netflix and Spotify, the all-you-can-eat model has been tremendously beneficial -- both have racked up millions and millions of subscribers to date. When it comes to offering mobile applications, though, that idea of subscriptions hasn't really taken off. Regardless of whether you're an independent developer or a major brand, you depend heavily on storefronts like Apple's App Store or Google Play to sell and promote your content. But Opera Software, known mostly for its web browsers, wants to change this. With its new Subscription Mobile Store initiative, Opera wants to give companies a platform to offer their apps through, as the name suggests, a subscription service.
In theory, Opera's marketplace would work in similar fashion to something like the Amazon Appstore, but without the one-time paid and "free" downloads. Instead, anyone making them could charge, say, on a weekly basis for access to their applications. It's definitely not a bad idea, now we'll just have to wait and see if Opera can manage to get others on board.
In this article: App Store, Apps, Opera, Opera Browser, Opera Software, Opera Subscription Mobile store, OperaBrowser, subscription, subscription app store


text:
An Interview With
Erik Larsen!
Erik Larsen took a few moments to answer some questions about Nova, a favorite character of his since Nova arrived in the 1970's. I'd like to thank Mr. Larsen for sharing his views on Nova!
1) You've mentioned elsewhere that you've been a fan of Nova since his introduction in 1976. What was it about the character you enjoyed as a young reader?
More than anything it was that this was a new character introduced at a time when there were relatively few new characters. He was young, a loser, a poor student-- everything I wanted in a superhero. Plus, he could fly-- simple, I know, but there was something very basic and straightforward about the whole concept. It worked for me. And that costume just kicks ass!
2) In your Nova series, what was the cause of Nova's power fluctuations?
It was mostly a way of scaling him back a bit. The reason was simply that the powers had been given back and forth one too many times but on a story/plot level-- the character was just too powerful-- every fight should have simply ended with him blasting the crap out of whoever he was facing with eye-beams. Fluctating powers worked for me-- there were a lot of things I could have done with this.
3) What storylines did you have planned for Nova if the series had continued?
Too many to go into-- since I expect to get around to all of them in one book or another-- I'd rather NOT go into it in too much detail but I'd certainly have used Red Raven more and brought back a very different Diamondhead. I had a lot of cool plans.
4) Your Nova series never seemed to be given the chance to find an audience. What do you feel were the reasons for its early cancellation?
I have no idea. I think that they were expecting it to be a bigger hit. They were expecting what they'd gotten on Thor, Spider-Man, Fantastic Four and all the Heroes Reborn books. They pushed the first issue pretty well but once the numbers came in they abandoned ship pretty quickly. This is Nova, guys-- he's NEVER been big-- he's had his book cancelled twice and a team book he was part of as well. It's like expecting big things from a Dr. Strange relaunch-- it's NOT gonna happen. I think they looked at how much they spent on promoting the first issue and said, "we'll never earn this back." I think they'd have been better served to have pushed this like they did a title like Thunderbolts or Heroes for Hire--or even New Warriors -- they didn't go all-out on those ones and they got modest selling books that lasted for a while. I'd rather have had a book that sold less out of the gate but lasted longer.
5) Would you like to write the character again and, if so, would you approach the character any differently?
Sure I'd like to write him again-- at this point, I imagine I'd handle him much the same, seeing as how I went to all the trouble to get him where I wanted him. It's a bit early for me to start second-guessing myself. Give me a few years and I'll get back to you on a new direction I might take-- at this point, I still thought what I did was a decent approach. There were a few things I should have done differently but not that many. I'm reasonably happy with how things went.


text:
Patients' roles and...
Patients' roles and rights in research
BMJ 2018; 362 doi: https://doi.org/10.1136/bmj.k3193 (Published 25 July 2018) Cite this as: BMJ 2018;362:k3193
All rapid responses
Rapid responses are electronic comments to the editor. They enable our users to debate issues raised in articles published on bmj.com. A rapid response is first posted online. If you need the URL (web address) of an individual response, simply click on the response headline and copy the URL from the browser window. A proportion of responses will, after editing, be published online and in the print journal as letters, which are indexed in PubMed. Rapid responses are not indexed in PubMed and they are not journal articles. The BMJ reserves the right to remove responses which are being wilfully misrepresented as published articles.
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Patients and stakeholders take part in research
In the Ambito Territoriale sociale 24 of Marche Region, Italy, there has been a survey of 45 psychotic patients and their families, to know opinions on both sides, and to establish the elements for a better clinical relationship with patients. Patients responded to SF-36 and families to QOL-Proxy for information about physical and mental health. A person from the Mental Health department used HoNOS scales in further evaluations.
Patients were requested to have an active part in research about physical and mental health, their answers showing concordance for these two dimensions. When comparing HoNOS items for alcohol and drugs misuse, illegal behaviours and self harm with hospitalization rate, we found that increased discomfort index corresponded to decreased mental health score in the SF-36 inventory. SF-36 and QOL-Proxy were according to the evaluation of the quality of life.
A small example of involving patients and caregivers in research.
Competing interests: No competing interests
damiani tiberio
Asur Marche, Mental Health Department, Area Vasta 5, Ascoli Piceno
via degli Iris, Ascoli PIceno
Research, rights and outcomes in psychosis
Patients and stakeholders take part in every step of psychosis care pathways; their involvement is the basic element to improve a correct therapeutical relation, aiming to overcome refusal and compulsion.
Patients, stakeholders and clinicians should aim to enhance outcomes in psychosis management. Research shows that clinical management and outcomes of psychosis are closely connected and requires decades of care and integrated treatments.
Stakeholders and patients are often requested about the side effects of medicaments, as well as about the personal relationships with the crews of mental health departments. It is a basic element to recognize a shared role in improvement of psychosis care. For example, some neuroleptics can reduce delusions successfully, but patients and stakeholders can complain about physical side effects bothering a normal working day. It is a daily situation in mental health care: the right of patient and stakeholders to request a more adequate treatment. These opinions need to be accepted by clinicians, who not infrequently may fear new therapies which "could reduce side effects but could not in the meantime reduce delusions successfully".
Sharing information for research means that patients, stakeholders and clinicians can get together and establish what is important to be explored. It means that patients and stakeholders can express opinions and clinicians can listen to them and recognise their rights.
On the other side, they have not always an equivalent position, because of responsibility, which is always different for all involved subjects. Patients often have a strictly dual relationship, accepting or refusing treatments; stakeholders challenge clinicians to overcome guilt and uncertainty about relatives' life and management; clinicians more and more have a defensive way of working in order to limit responsibility. Not always do they sit together and discuss, not always do they recognise each other's right of expression outside of "institutional roles".
It would be noteworthy for all, and it would Improve clinical management, when we all will learn to share opinions with patients and stakeholders; it would also help in reducing disputes and complaints and also in reducing compulsory treatments.
Research in mental healthcare should not only point to drugs and side effects but must be open to some more topics:
- quality of life: personal, familial and in communities;
- the ability to have a personal role as worker and as a parent for a child, and also as an adult caring for elderly parents;
- the ability of patients to have a life free from drugs and alcohol outside closed facilities or prisons;
- the ability to limit self harm;
- the ability of the MHD to reduce hospitalisations and access to sheltered facilities and reduce compulsory treatments.
These points of daily work in mental health need to be based on the opinions of patients, stakeholders and institutions (municipalities, GP, social insurance…). These data could also be useful for ameliorating outcomes of the complex management of psychosis.
It should also be kept in mind that reduced acute hospital costs with regular therapies mean also reduced stress for families and patients. For this specific point, we know how to measure hospitalization costs, but we don't know how to measure the stress of families and patients. That means, we know only how to measure economics but other values need still to be defined: what is the value of one year without psychotic accidents, or one year with a parent in a sheltered facility, dislocated far away from his or her original city?
Two examples for a shared work in searching new ways of integrated treatments.
Asur Marche, Area Vasta 5, mental health department
Via degli Iris Ascoli PIceno
Re: Patients' roles and rights in research
Men should be warned about uncertain safety of multi-needle prostate biopsy.
Godlee et al. stress that researchers must accept patients as full partners included in design, conduct and reporting of clinical research, along with presenting and disseminating results to participants and relevant communities (1). However, patient/research subjects must also take centre stage regarding safety.
Population screening for prostate cancer with PSA has failed to improve men's survival. Treatment outcomes remain disappointing, especially following radical surgery for 'early intra-capsular disease'. Five recent studies report underestimation of tumour extent on histology of excised prostate glands: in a third of men malignant tissue was outside the capsule; in a quarter tumour tissue was incompletely removed in the unsuccessful operation (2-6).
Nevertheless, urologists press on, using ever-increasing numbers of biopsy cores in men with only slight elevation of PSA, seemingly indifferent to the possibility of local extension and needle track spread. Thus, this potential adverse event has not been routinely sought. Suggestions that MRI scan post-positive biopsy might accurately assess the extent of malignant tissue before treatment decision-making have been disregarded (7). Men managed by 'watchful waiting or 'active surveillance' may receive repeat interval biopsies with additional risks of local tumour extension each time.
Without adequate investigation of potential local effects of multi-needle prostate biopsy, there is uncertainty about harm. Not looking leads to 'lack of evidence' which should not be accepted as 'evidence of no harm'.
Men should be warned that multi-needle prostate biopsy has the potential to cause extra-capsular tumour spread.
G. David Stainsby, FRCS, Retired Consultant Orthopaedic Surgeon
Susan Bewley, MD FRCOG c/o Department of Women's and Children's Health, Kings College London
Declaration of interest: GDS participated in the ProTecT trial (2). Unusually, post positive biopsy, he underwent ultrasound examination which showed unexpected extra-capsular tumour spread, confirmed and demonstrated in greater detail by MRI scan.
1. Wicks P, Richards T, Denegri S, Godlee F. Patients' roles and rights in research. BMJ 2018;362:k3193. http://dx.doi.org/10.1136/bmj.k3193.
2. ProtecT study. Prostate testing for cancer and Treatment. HTA No 96/20/99. Principal investigators: FC Hamdy, JL Donovan, DE Neal. Coordinator: JA Lane.
https://www.nejm.org/doi/full/10.1056/NEJMoa1606220
3. Gardiner RA, Yaxley I, Coughlin G, et al. A randomised trial of robotic and open prostatectomy in men with localised prostate cancer. BMC Cancer 2012;12:189. [PMID: 22632109].
4. Yaxley JW, Coughlin GD, Chambers SK, et al. Robot-assisted laparoscopic prostatectomy versus open radical retro-pubic prostatectomy: early outcomes from a randomised controlled phase 3 study. The Lancet; 2016;388:1057-66. [PMID:27474375].
5. Pearce SM, Pariser JJ, Karrison T, Pate SG, Eggener SE. Comparison of perioperative and early oncological outcomes between open and robotic assisted laparoscopic prostatectomy in a contemporary population based cohort. J Urol 2016;196:76-81. [PMID: 26860793].
6. National Prostate Cancer Audit 2016 Annual Report https://cancerservicesnews.wordpress.com/2016/.../national-prostate-canc....
7. Stainsby GD. 10-Year Outcomes in Localised Prostate Cancer. Letter to Editor. N Engl J Med 2017; 376: 178-181. January 12: 2017. https://www.nejm.org/doi/full/10.1056/NEJMc1614342
G. David Stainsby
Retired Consultant Orthopaedic Surgeon (Newcastle upon Tyne)
Susan Bewley (c/o Department of Women's and Children's Health, Kings College London)
Patient s role and rights in research to Achieving health equity.
In case of Patients role and rights in research Achieving health equity there are many hurdles .to overcome these hurdles, we must look into various basic issues as well as strategic plans.
1 Cultural and ethical issues
2. Issues and concerns related to research.
3. Issues related to Globalization etc.
4. Use of Scientific Advances in Patients healthcare research.
There are several issues which directly as well as indirectly influence the patient's role in research like, the role of technology, scholars, and ethical issues, and so on. where culture plays an important role.
Poverty is a subject usually the ultimate cause of injustice. It may involve sex bias, language hurdles, joblessness, bribery etc.
The role of Science and art is exploring, creating and delivering value to satisfy the needs of a target community. Patient participation in research defines, measures and quantifies potential. To achieve "health for all by the year 2000."We must work hard. Agencies are working over issues like urbanization, globalization, deforestation, climate change but not on one of the major issues like patient role and rights in research. In this aspect WHO strongly work with joining hands with FDA, ICMR etc. to analyze, and amalgamated an information on health systems and priority public health conditions.
Economic inaccessibility, limited funding, skilled human power, lack of equipment disappointingly limited in the role of patients in research. While developing and countries under the poverty line, face an increasing prevalence of non-communicable disease leads to the paradigm shift of the coexistence of communicable disorders.
Role of drug transporters with vehicle biology and has grown strangely over the last decade (1)(2). Use of interprofessional participation(3). Properly driven Rand D will defiantly helpful to overcome the patient risks and proper research.
Use of pilot study to evaluate the feasibility of research on human subjects as well as to form study design (4). Protecting patient's fundamental rights (5) like patient participation in decision-making(6)
The millennium development goals and post-developmental goals not impressive where the neediest populations live, Research in Holistic care is often abandoned in case of the procedures for controlling the disease. Must focus on Serious ADRs may result in permanently disabling, or resulted in death.
In conclusion, both accreditation assistance, corporate and participant people must work together in the field of Performance enhancement of clinical research. As Sydney J Harries rightly said, "The whole purpose of education is to turn, mirror into windows".
1. Hediger M.A., et al. The ABCs of membrane transporters in health and disease (SLC series): Introduction.Molecular Aspects of Medicine 2013; 34: 95–107
2. Martinez, M.N., Amidon, G.L., A Mechanistic Approach to Understanding the Factors Affecting Drug Absorption: A Review of Fundamentals. The Journal of Clinical Pharmacology, 2002;
3.Hall, P., & Weaver, L. Interdisciplinary education and teamwork: a long and winding road. Medical Education, 2001.35(9), 867 - 875.
4.Leon AC, Davis LL, Kraemer HC. The role and interpretation of pilot studies in clinical research. Journal of psychiatric research. 2011 May 1;45(5):626-9.
5.Guadagnoli E, Ward P. Patient participation in decision-making. Social science & medicine. 1998 Aug 1;47(3):329-39.
6.Lazarou J, Pomeranz BH, Corey PN. Incidence of adverse drug reactions in hospitalized patients: a meta-analysis of prospective studies. Jama. 1998 Apr 15;279(15):1200-5.
Kamath Madhusudhana
Division of Ayurveda ,Centre for Integrative Medicine and Research,Manipal Academy of Higher Education,Manipal-576 104
Re: Patients' roles and rights in research - One Step in a Long Path
The BMJ should be congratulated on their move to require clinical research submissions to outline the role of patients in the design, conduct and reporting of that research. Hopefully other journals will follow this precedence.
While an important step, there are many more to be taken. As mentioned by Wicks et al, many funding agencies have patient representatives on grant review committees, and this is true in Canada. In my experience the potential involvement of patients in this area has not been fully realized. Patients on these committees have little input into funding decisions and are relegated to reviewing a lay summary of the research limiting their comments to its relevance to the funding agency's mission. This is defended behind the excuse that patients are not skilled to understand and evaluate research, and results in tokenism at best.
With some training, patients could be educated sufficiently to interpret research, and let us not forget, patients are more than people with a disease. They have a host of life experiences. I have been on committees where patients have been lawyers and engineers, giving them an educated and unique perspective to add to the dialogue. In addition, one could question why agencies are funding research that cannot be written in a way that most people can understand. It is a skill to be able to communicate at various levels, and a skill that many of my colleagues would benefit from having.
Other levers that need to be involved include patient representation on research ethics boards. These boards work to protect patient rights yet patients are not involved in these decisions. With each passing year, the minimal requirements of consent forms increase and what used to be a three-page consent form can now be more than ten pages. This is not to say these well-intentioned requirements are unneeded, but one must realize a jargon-filled multi-page consent form makes understanding, and therefore participating in, research a barrier. Inclusion of patients on these boards can help inform the development of ethical policy that matters to those ask to be in the research.
The academic system also needs to change. An antiquated system in which the merit of research is based on what journal it's published in, not on how this research impacts society. As a result, once researchers have published their work, many stop there. It doesn't matter to a researcher's career how many (or if any) people it, and with respect to clinical research, undoubtedly the knowledge-users do not read scientific journals and will never see the publication. If a researcher does participate in extensive knowledge translation activities such as public presentations, engagement with media, blogging and social media, to name a few, this often goes unrewarded other than a pat on the back.
Participation in research design also needs to be rewarded. Much of the time patients spend on these engagement activities is volunteer. I have sat on a number of committees in which all members are being paid (or it is viewed as part of the member's service commitment for employment) except the patient volunteers. The patients that do volunteer should be applauded but I can't help but feel this creates an environment in which some people's time is valued more than others. Additionally we need to think of further ways to encourage and engage patients as many may have mobility issues and may just not feel well as a result of their condition. These are the exact patients clinical research is working to help, so their inclusion is vital.
As with any system change, there are many levers that need to be engaged. The BMJ's leadership is crucial as one step in the path forward, and I challenge others to follow their lead.
Wicks, P., Richards, T., & Godlee, F. (2018). Patients ' roles and rights in research. BMJ, 3193(July), 1–2. https://doi.org/10.1136/bmj.k3193
Scott A Lear
Faculty of Health Sciences, Simon Fraser University
@drscottlear
Patients' roles and rights in research: Where is Africa?
We welcome the editorial by Wicks et al on patients' roles and rights in research (Wicks, Richards, & Godlee, 2018) and agree entirely that patients in low-income countries are particularly sidelined. In Africa, the challenges are far greater due to the large educational and societal gap between researchers and patients. Thus, city-based foreign or local university-educated researchers may be studying an issue affecting those who have never attended school and whose life experience is completely different from that of the research team. This can lead to well-meaning but misplaced research questions, unsuitable consent processes, or protocol and outcomes that are inappropriate for the local context.
There is an ongoing important mismatch between patients, clinicians and research communities (Crowe, Fenton, Hall, Cowan, & Chalmers, 2015). In women's health, for example, Western researchers and funders working in sub-Saharan Africa have concentrated on maternal mortality and largely neglected the blight of infertility. Many rural women, however, consider infertility to be the more pressing problem due to its high prevalence and the dire social consequences in which it causes marriage breakdown, social stigma, and psychological distress. Their voice, however, is rarely heard.
Similarly, the patient information sheets (PIS) used as part of the informed consent process are based on those designed by Western ethics committees and rarely have patient input. This results in long and complex forms full of legal jargon which, far from providing clear information, can hide important information (Grady, 2015; Khalique Qc, 2015). This is akin to the 'small print' information used by banks and computer companies which is rarely read before signing or clicking 'I agree'. In this situation, the public would be better served by independent advisors highlighting the key, controversial sections in a short summary.
Patient involvement is also critical in selecting clinical study outcomes. In rural settings where women commonly have haemoglobins of 60 or 70 g/l, the use of Hb < 90g/l or blood loss over 500mls and an outcome in studies of postpartum haemorrhage correlates very poorly with the effect on key home activities that are so important for women in rural settings.
Our ongoing project on public involvement in women's health clinical trials in Uganda assesses recent PIS using linguistic readability scores. We are also working with the James Lind Alliance (Cowan & Oliver, 2013) to develop a context-specific approach to understanding the important research questions with women and the public in Uganda. We are also designing appropriate ways of delivering research information to women in these settings. Our preliminary study findings suggest that women fare better with short and pictorial information on a flip chart compared to the standard 6-7 pages of participant information, but we are running a randomised trial to demonstrate this. We would welcome the chance to work with the BMJ in progressing this important topic in Africa.
Cowan, K., & Oliver, S. (2013). James Lind Alliance Guidebook (Version 5). (James Lind Alliance, Ed.). Southampton: James Lind Alliance. Retrieved from www.jla.nihr.ac.uk
Crowe, S., Fenton, M., Hall, M., Cowan, K., & Chalmers, I. (2015). Patients', clinicians' and the research communities' priorities for treatment research: there is an important mismatch. Research Involvement and Engagement, 1(1), 2. https://doi.org/10.1186/s40900-015-0003-x
Grady, C. (2015). Enduring and Emerging Challenges of Informed Consent. New England Journal of Medicine, 372(9). https://doi.org/10.1056/NEJMra1411250
Khalique Qc, N. (2015). Informed consent: The dawning of a new era. British Journal of Oral and Maxillofacial Surgery, 53(6), 479–484. https://doi.org/10.1016/j.bjoms.2015.04.014
James Ditai
Andrew D Weeks, Professor of International Maternal Health, University of Liverpool
Sanyu Africa Research Institute, Mbale Uganda
@SAfRIMbale
The Dead Hand of Research Committees; More Means Less
Your recent editorial, "Patients' roles and rights in research" [1] ended with an invitation for comment; here's mine: the proposals, and the journal's determination to act on them, would be another nail in the coffin of clinical research and the skills that go with it.
The editorial declares that "including patients and the public as partners in research is accepted best practice in several Western countries…" but by whom and for what reason? It notes the sorry evidence that "The exponential rise in research output has been accompanied by a decline in quality… [with]… high levels of waste, bias, inefficiency, and error"; but the idea that the rot would be slowed by the proposed collaborative effort with patients is nonsense; it runs counter to the way research operates, as I will show by the reality of example, rather than words for comment and death by debate.
In the course of a medical ward round, we reviewed and moved on from an elderly man with a pulmonary disorder. But I remained intrigued by his senile purpura and when the round was over, went back to the patient, asked if I could take and reinject a little blood – and immediately found that a tiny i.d. injection of fresh blood produced a typical lesion of senile purpura on susceptible skin of the extensor forearm; that, in turn, led me on to show it only raised a wheal when injected elsewhere. This critical observation was the key to the explanation of senile [2] and corticosteroid [3] purpura by the shearing and fluid spread in collagen deficient skin; more importantly, it led to a new method for the measurement of skin collagen and the considerable literature on the changes with age [4], endocrine and associated bone disease [5].
But note, it was the initial experimental response that made the sense of my half-baked intuitive idea; I could not have justified a research proposal without it. The logic of a novelty may only become apparent after the pilot experiment is done, but research committees want the logic first. That's the Catch 22 of research approval by committee, and that's why they approve proposals for which the outcome is predictable, and put their dead hand on the unknown of novelty. Thus, our study showing that patients with dermatitis herpetiformis have jejunal changes "indistinguishable from coeliac disease" [6], would never have been allowed by a research committee, because it was based on little more than my wild "hunch"; yet the defect it revealed has been confirmed many times by others. Of course, even without our defining studies, that discovery would have been made eventually, just as would have the cause of senile and corticosteroid purpura, and the tissue collagen work that led on from it; but does that justify the exclusion by committee of the creative clinical research that leads to novelty?
The editorial proposal for yet another committee is dangerous; of course it would not harm the dull academic labour that now masquerades as clinical research – the churning out of massive double-blind, case-controlled, randomised studies that mostly confirm what we already know, or don't need to know, about drugs and disease – maybe, indeed, the extra paperwork would improve things by delaying their approval. But when applied to clinical research that is inspired to find and create new things, the editorial proposal will serve only to kill its few remaining shoots. The BMJ should know better.
Sam Shuster
1 Patients roles and rights in research. BMJ 2018; 362:k3193
2 Shuster, S, Scarborough, H. Senile Purpura. Quart J Med , 1961,30, 33-4
3 Scarborough, H., and Shuster, S. (1960). Corticosteroid purpura. Lancet, i, 93.
4 Shuster S, Black MM, MacVitie E. The influence of age and sex on skin thickness, skin collagen and density. Br J Dermatol . 1975; 93 : 639–643.
5 Shuster S. Osteoporosis, a unitary hypothesis of collagen loss in skin and bone. Med Hypoth. 2005; 65:426-432.
6 Marks JM, Shuster, S, Watson, AJ. Small bowel changes in dermatitis herpetiformis. Lancet 1966, ii, 1280-1282.
emeritus professor of dermatology
Patients' roles and rights in research - Involving underserved patient populations
With great interest we have read the article by Dr. Paul Wicks and colleagues. We recognize in particular the observed challenge to ensure diversity within collaborations so the interests of the well-educated white middle classes in rich countries do not dominate. We think this is of utmost importance.
It is still practice to exclude patients from underserved groups from scientific research, even as participants. For example, in many studies migrant patients are explicitly excluded because they do not speak the language of the researcher and cannot read a questionnaire or give informed consent. This results in a lack of insight into their potential needs, worries, problems, and wishes, perpetuating inequalities in health and access to care.
We think it is vital that patients (or patient representatives) from underserved groups are involved in all stages of the research process. Research methodology specifically aimed at meaningful engagement of service-users from underserved groups exists (such as participatory research and action methods). But also outside of such design the opportunities are many. Patients or representatives can help to think about which research questions are important to their communities, and help prioritize a research agenda. They can support researchers in formulating understandable and – if necessary – culturally appropriate information about the research, help to construct understandable and culturally appropriate questionnaires, topic lists for interviews or instructions for participatory research, and they can be involved as language concordant interviewers. Patients or representatives can also be included in the research team to support the analysis and the writing of the results, or be asked for advisory boards so that their experiences will be learned from and taken into account. In this, it is absolutely necessary to heed the input that is given, communicate findings and recognize the role played by these patients by offering compensation or discuss matters of shared authorship/ownership.
It is the experience of many researchers in the field of migrant health that indeed it involves effort to see after participation of or co-creation with patients from underserved groups. It requires taking into account linguistic and cultural factors, health literacy, educational level, and unfamiliarity with or lack of trust in scientific research. Researchers should be aware both of these factors that hinder patients from underserved groups to participate in research, and of their responsibility to overcome these.
In order to truly obtain equity in health care and reduce inequalities in health, we believe that researchers should learn to become responsive to diversity, i.e. they should learn to recognize and lower specific barriers for patients from underserved groups.
Jeanine Suurmond
Marieke Torensma
Amsterdam UMC, University of Amsterdam, Amsterdam Public Health Research Institute, dept Public Health
Meibergdreef 9 Amsterdam
Further actions are required to enhance patient engagement in research, service improvement and audit.
We have read the article of Dr Paul Wicks et al. with interest, and the BMJ is to be congratulated for introducing initiatives to enhance patient engagement at all stages of the research process and we hope that journals and other medical media will do the same.
Every organization has to comply with research governance--i.e. systems and processes that ensures that research is conducted according to the expected standards and regulations (1). A prominent part of this process is safeguarding patient rights and confidentiality and the need to obtain patient consent. However, engagement of patients in research procedures does not effectively appear to be part of the aim of this governance requirement. It is imperative, therefore that this engagement is embedded in this process.
When patient and public engagement is being pursued, governance appears to be done through certain groups or committees,such as those based in hospital settings and in community settings. Inevitably, the same individuals would be consulted resulting in systematic bias. It would be more inclusive and effective to widen the engagement by involving members of the public more than just members of hospital/healthcare organization committees in order to further optimise this process. Also it is important that members from the public who are being consulted are trained or undergo some form of brief induction in order to further assist them to offer their views and expectations. Needless to say that consultation with patients must encompass all stages of the research pathway.
There are the patient expert groups such as the diabetes group, congenital cardiomyopathy group, MRSA support group, etc., who are also well placed to engage and advice on patient matters within the context of research but at a more informed level.
In healthcare organizations in the State of Qatar, the emphasis of involving patients in research initiatives is well made. An example is the inauguration of the Qatar Metabolic Institute that is tackling public health priorities which are similar to other countries, namely diabetes, obesity and other related illnesses (2).The Institutional Review Board will also ensure that research projects incorporate patient engagement (3).
Any venture of increase awareness of prevention of illness and promotion of health and well-being must include patients and the public to have the opportunity to influence research and development including prioritization of them.
Finally, patient and public engagement needs to also apply on projects to do with service improvement and audit applying the same principles and rigueur as those applied in research.
1.	https://www.hra.nhs.uk/planning-and-improving-research/policies-standard...
2.	https://www.hamad.qa/EN/Education-and-research/Academic-Health/News/2016...
3.	https://www.hamad.qa/EN/Education-and-research/Medical_Research/IRB/Page....
Walid Al-Wali
Consultant Medical Microbiologist and former Executive Medical Director.
Manal Hame, Specialist Medical Microbiologist, Al-Wakra Hospital, Dr Godwin Wilson, Specialist Medical Microbiologist, Al-Khor Hospital, Anand Deshmukh, Specialist Medical Microbiologist, Hamad General Hospital, Doha, State of Qatar
Hamad Medical Corporation,Doha,Qatar.State of Qatar.
Section of Medical Microbiology, Hamad General Hospital, Hamad Medical Corporation, PO Box:3050, Doha, State of Qatar
Re: Patients' roles and rights in research
As the first patient representative on the BMJ Editorial Board I am delighted to see the progress made by PPI (Patient and Public Involvement) in research over the last 25 years. But as your editorial maintains, much still needs to be done. Whereas in many areas, academic research in universities usually now requires patient representation on trial committees, the pharmaceutical industry still has a long way to go. The inducements sometimes offered by drug companies in the form of funding of patient groups is unlikely to be wholly disinterested.
Unfortunately systematic reviews are still constrained by the parameters of the original research papers, which they draw together to reach some kind of collaborative consensus on the topic studied. One thing that particularly concerns me is the inconsistency of the original research papers in publishing data on adverse effects of treatments. If these are not reported in the original paper they will be lacking in the systematic review: and too often they are not.
One particular detail of the research on the breast cancer drug Tamoxifen continues to bother me: its possible effects on the singing voice are still not reported in the British National Formulary. While this might not be disastrous, even though distressing, for an amateur singer (such as myself), it would end the career of a professional singer. The effect of hormones on the voice has long been known: remember the castrati? The famous singer Kathleen Ferrier refused an oophorectomy because she 'regarded her voice as a divine gift and would go to the grave with the voice as it had been given her.'(1)
Also of course the researchers don't always get it right. It was only an extensive campaign on the part of patients that helped to set the record straight, after the disastrous research on the Bristol Cancer Help Centre (now Penny Brohn Cancer Care) was shown to be fatally flawed. (2)
I suggest that the remedy lies in the editorial policies of the medical journals that publish the original research. In my view papers should not be published unless a full account is given of adverse effects of treatments, and/or PROMS (Patient Reported Outcome Measures) whether of drugs or of medical devices. Only patients can help here, which is why their participation in research policy is so important, and why they should be fully supported, with expenses paid and meetings made as patient-friendly as possible. They often have much to contribute: patients might also be experts in relevant fields, for instance statistics, psychology, nutrition, and so on. We all need to work together. Congratulations to the BMJ for taking the lead, but much more still needs to be done.
Suggestions from patients for research topics might also be helpful. A particular concern of mine at present is the current controversy over the herbicide glyphosate, which is widely used all over the UK in farms, parks and gardens. Whether or not it causes cancer is hotly debated. It would surely be a relatively simple piece of research to use existing data to see whether people working in these areas have a higher incidence than average of certain cancers, particularly skin cancers. The Biobank might contribute. There will be many other topics where patients could suggest ideas.
Heather Goodare, Cochrane Consumer representative
1. Leonard, Maurice: Kathleen: The Life of Kathleen Ferrier, 1912-1953 (Futura 1989) p. 230.
2. Goodare, Heather (ed.) Fighting Spirit: the stories of women in the Bristol breast cancer survey, Foreword by Sheila Hancock OBE (Scarlet Press, London 1996)
Heather M. Goodare
retired counsellor (and cancer survivor)
Cochrane Collaboration Consumer
3 Glengyle Terrace, Edinburghj EH3 9LL
Paul Wicks vice president of patient innovation, Tessa Richards patient partnership editor, Simon Denegri NIHR national director for patients, carers and the public, Fiona Godlee editor in chief
Wicks Paul, Richards Tessa, Denegri Simon, Godlee Fiona. Patients' roles and rights in research BMJ 2018; 362 :k3193
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