Everyone knows we should "buy low and sell high," so it is surprising when investors force themselves to sell low simply because they didn't think ahead.
At retirement, investors usually stop investing and start withdrawing cash to fund their lifestyles. If dividends and interest can't produce enough cash, assets must be sold each year to make up the difference.
When the stock market is high, selling stock annually to generate cash isn't a problem. But eventually, a bull market turns into a bear and prices fall. Anyone failing to take precautions will then have to accept lower prices.
A simple "bucket strategy" can solve the problem.
If you estimate you need $20,000 annually to supplement dividend and interest income, you can sell $100,000 of assets now, when prices are high, and fund five years of $20,000 "income buckets." Bucket 1 will hold a one-year treasury note, bucket 2 a two-year note, and so on out to five years. Treasury notes (or insured certificates of deposit) are used because safety is paramount.
One year later, bucket 1's bond has matured, producing necessary funds, and four buckets remain.
If prices are high, you should sell assets to refill the fifth bucket with a five-year T-note. If a bear market arrives and prices are low, you won't need to sell and can hold out for five more years.
This is a simple — yet inexpensive and effective — plan.


text:
, Chris Hogan destroys millionaire myths that are keeping everyday people from achieving financial independence. Chris and the Ramsey research team surveyed over 10,000 US millionaires, discovering how these high-net-worth people reached their financial status. And the formula might surprise you.
Millionaire status doesn't require inheriting a bunch of money or having a high-paying job. No. The path to becoming a millionaire is paved with more-ordinary tools - tools that you either already have or that you can learn. If you thought you could never become a millionaire, think again. Listen and learn from over 10,000 everyday millionaires who have done it and believe it's possible for you too.", "schema:abridged": "false", "schema:encodingFormat": "MP3 Audiobook, WMA Audiobook, AAC Audiobook", "schema:playerType": "Requires OneClick Digital Media Manager", "schema:audio": "https://audio-ssl.itunes.apple.com/apple-assets-us-std-000001/AudioPreview113/v4/b1/62/c0/b162c009-7f6b-aa92-590d-21b7d7702ad7/mzaf_735587837364925237.std.aac.p.m4a", "schema:embedUrl": "https://audio-ssl.itunes.apple.com/apple-assets-us-std-000001/AudioPreview113/v4/b1/62/c0/b162c009-7f6b-aa92-590d-21b7d7702ad7/mzaf_735587837364925237.std.aac.p.m4a" }
Everyday Millionaires: How Ordinary People Built Extraordinary Wealth - and How You Can Too (Unabridged)
Genre: Business & Personal Finance
℗ © 2018 Ramsey Press
Everyday Millionaires: How Ordinary Peop Chris Hogan
More by Chris Hogan
Retire Inspired: It's Not an Age, It's a Financial Number (Unabridged)

redpajama_set_name: RedPajamaCommonCrawl


8/11 Maria's last day of summer lab, Maddie is bad and got up on the white couch!
8/19 Evan bought us a Meyer lemon tree!
Well guys, we made it through one month of home ownership without burning the property down AND without killing each other. I'm calling this a major victory. It has been a super stressful summer, and I'm surprised we were able to keep it together.
First and foremost, we're so glad to be done with house hunting and can focus on getting situated. It's strange to think we'll live in this house for years to come, but it's also nice to know we won't be moving anytime soon.
Our move to the new house went pretty smoothly...thanks to Two Men and a Truck. Evan and I decided that we were probably too old to call upon friends or family members for help, so we thought we'd try hiring professionals.
MOVING DAY! Goodbye, Portis Ave!
We moved all of the boxes and smaller items ourselves, and three men, actually, helped us with all of our larger items (i.e. furniture, grill, tv...etc). Hiring movers ended up costing us about $600 for 3-4 hours, but it was well worth it. We were done with the move by noon and had the rest of the day to unpack.
We had planned on celebrating our move that evening, but leave it up to me to muck it up. Let's just say I got into a little fender bender, and I'm still mad about it. Just a note for people who speed. Please slow down...especially during rush hour. Also, why do people still text and drive?! I don't get it.
Anyways, the accident definitely left a damper on the day, but Evan really came through and did his best to calm my nerves. His affirmation during trying times is just one example of why I want to marry him (and I'm smiling as I write that).
The rest of the month has been problem-free though, and we're grateful for that. Our 80 year old home seems to be in good shape and no issues have arisen. I feel like we've mostly been trying to maintain the existing landscaping as best as we can. Evan's dad bought us a lawn mower that we've already put to good use.
His co-workers also gave us a gift card to Home Depot, which we used to buy a weed whacker. Did you know weed whackers are actually named string trimmers? Who refers to it like that?
So yeah, the yard is being managed, while the inside of our home still needs a lot of work. The biggest thing we've accomplished thus far was getting our giant wooden box spring up the tight staircase. We were going to buy a new one, but thought it would be a waste of money. Especially since we've been talking about investing in a new bed altogether. Thankfully, a quick Google search showed us how to move a box spring that just won't fit. Thanks Internet.
For those of you who would like an update on Maddie, she's slowly adjusting. It always takes her a while to get acclimated and feel secure in her new surroundings. It took her 2-3 weeks this time around, and I'm happy to report that the pig finally feels safe to roam the yard on her own. She even found a bunny friend to harass. What a bully!
Beyond the housework, we've had a few visitors come through, and it has been so much fun introducing the place to everybody. We love our new home, and we hope everyone we who visits loves it too.
My parents and brother visited! Good times.
Also, I want people to know that this house not only represents a home to me, but also Evan's great ability to care for me. I'm so proud of him and all of his hard work. We both know this wouldn't be possible without his frugality and his sacrifices. He really is the best.
And you guys are the best for supporting me and us in all of our endeavors. I love sharing my life through blogging, and hope I can inspire you as much as you inspire me. Love you all!


text:
'The One I Love' Review: Elisabeth Moss, Mark Duplass Explore Unconventional Couples' Therapy
This haunting Sundance hit is worth seeing before someone spoils its surprises
Alonso Duralde | August 14, 2014 @ 4:39 PM	Last Updated: August 14, 2014 @ 8:49 PM
(Note: Every so often a movie comes along that's nearly impossible to describe without spoiling, so I'll do my best to explain "The One I Love" in the vaguest terms possible.)
"The One I Love" stars Elisabeth Moss and Mark Duplass as Sophie and Ethan, a couple who has seen its relationship go from exciting and passionate to dull and routine. It's not just familiarity that has bred contempt between them: Ethan was unfaithful once, and Sophie has yet to forgive him. At the same time, she has habits and walls of her own, so she's hardly blameless for their current malaise.
See video: Elisabeth Moss, Mark Duplass Discover a Deeper Mystery in 'The One I Love' Trailer (Video)
At the advice of their therapist (Ted Danson), the two of them spend a weekend at a beautiful country house in hopes of reconnecting. What they find on the grounds is far more than they'd expected, and it becomes less clear whether the vacation will be the best or worst thing possible for their relationship.
Director Charlie McDowell and writer Justin Lader, both making impressive feature debuts, lull us into expecting a low-key drama about two people trying to get their groove back, something along the lines of Meryl Streep and Tommy Lee Jones in "Hope Springs." Once the film takes its turn, we're no less engaged in what happens to Sophie and Ethan, but the path toward whatever resolution awaits them isn't what we would have expected.
Moss and Duplas carry a heavy burden, but they're more than up to the task of everything the film throws their way. Each has to explore various facets, shadings and tones of these characters, and each succeeds impressively. It's never easy to capture simultaneously the spark that brings a couple together and the resentments that drive them apart, but these actors nail all that — and even more.
Also read: 'True Detective' Plot Details Emerge; Vince Vaughn in Talks, Elisabeth Moss Circling
Weeks after seeing the film, I find myself thinking about tiny choices and little details that each actor brings to the work, and what they're able to accomplish is extraordinary, particularly since they're called upon to keep the action grounded in reality when the movie takes a very big leap.
Editor Jennifer Lilly ("Were the World Mine") and composers Danny Bensi and Saunder Jurriaans also play a key role, increasing the tension and suspense with such delicacy that, like the proverbial frog in the pot of heating water, we barely notice the growing unease as it escalates.
Also read: Radius-TWC Partners With Blumhouse, Duplass Brothers on 'Creep' Trilogy
The challenge of going for a big twist like this is that you've either got to keep it a mystery or explain it, but if you're going to explain the twist, it still has to make sense. That's where "The One I Love" drops the ball a bit; better to eschew logic and rationality altogether rather than offer up a solution that doesn't really scan.
Still, even with a slightly unsatisfying resolution, "The One I Love" remains provocative and haunting. See it before someone spoils the surprise, but maybe don't go with a first date; like the R.E.M. song of the same name, the title implies romance and sentimentality, but the text delivers something else entirely.
Jon Stewart Confesses Biggest Interview Regret to Elisabeth Moss (Video)
By Tim Molloy | August 5, 2014 @ 8:22 AM
Olivia Wilde, Elisabeth Moss, Natasha Lyonne Join Female DP's Directorial Debut
By Jeff Sneider | July 30, 2014 @ 1:30 PM
Mark Duplass' New Web Series 'Wedlock' Seeks to Redefine Indie TV (Exclusive Video)
By Jordan Zakarin | March 7, 2014 @ 12:42 PM
Alonso Duralde, TheWrap's reviews editor, has written about film for Movieline, Salon, MSNBC.com. He also co-hosts the Linoleum Knife podcast and regularly appears on Who Shot Ya? and Breakfast All Day. Senior Programmer for the Outfest Film Festival in Los Angeles, he is also a consultant for the USA Film Festival/Dallas, where he spent five years as artistic director. A former arts and entertainment editor at the Advocate, he was a regular contributor to FilmStruck and to "The Rotten Tomatoes Show" on Current. He is the author of two books, "Have Yourself a Movie Little Christmas" (Limelight Editions) and "101 Must-See Movies for Gay Men" (Advocate Books).


text:
Andrew Taylor, Associated Press Andrew Taylor, Associated Press
https://www.pbs.org/newshour/nation/amid-sit-in-house-passes-1-1-billion-zika-defense-bill
Amid guns sit-in, House passes $1.1 billion Zika defense bill
Nation Jun 23, 2016 9:41 AM EST
WASHINGTON — The House has passed a $1.1 billion House-Senate measure to combat the Zika virus, but the GOP-drafted measure is a nonstarter with Senate Democrats and the Obama White House.
The measure was unveiled late Wednesday and approved by the House early on Thursday morning by a 239-171 vote that broke along party lines.
Now, the House-passed compromise measure advances to the Senate, where Democrats promise to filibuster it to death.
The vote came after Democrats hijacked the House floor for virtually all of Wednesday and well into Thursday, protesting GOP inaction on gun legislation in the wake of the mass shooting in Orlando. GOP leaders called the vote abruptly, permitting no debate, and immediately adjourned the House through July 4.
The rapid turn of events of Zika ignited another round of the partisanship that has dogged the measure from the start and raised questions about whether lawmakers will manage to pass anything on Zika in the short time left before exiting Washington in mid-July for the political conventions.
Thursday's measure splits the difference between earlier House- and Senate-passed versions. It matches a bipartisan $1.1 billion figure adopted by the Senate last month to combat the Zika virus, which can cause grave defects and can be transmitted by mosquitoes and sexual contact.
The House was largely satisfied in their demand to pair the Zika funding with about $750 million in offsetting cuts to spending, including $543 million in unused funds from implementation of Obama's health care law and $107 million in cuts to leftover Ebola funding.
But Democrats erupted in opposition, citing provisions that effectively blocked Planned Parenthood from delivering birth control services under a $95 million grant program and a watered-down version of a provision backed by the House that would ease rules on certain pesticide permit requirements for battling the mosquitoes that can spread Zika.
A pregnant woman recieves a routine check up in front of fliers explaining how to prevent Zika, Dengue and Chikungunya viruses at a public hospital in San Juan, Puerto Rico. Photo by Alvin Baez/REUTERS
"This plan from Congressional Republicans is four months late and nearly a billion dollars short," said White House press secretary Josh Earnest. President Barack Obama requested $1.9 billion four months ago to fight Zika. Republicans initially displayed little urgency to respond to the request, and forced the administration to devote more than $500 million of unspent Ebola funding to fight Zika.
Democrats also opposed cutting unspent money to pay for the Zika measure, saying said it is wrong to require spending cuts to pay for a response to a public health crisis while not requiring them for past emergencies such as wildfires, floods and Ebola.
Rep. Nita Lowey, D-N.Y., said the offsetting spending cuts would "set a precedent that will hinder our ability to respond to the next public health crisis, natural disaster, or national security event."
But Republicans said that the cuts were in fact relatively innocuous. For instance, the $543 million cut to "Obamacare" was to a pot of money aimed at helping territories set up health insurance exchanges under the law. None of them did so. And Democrats privately signaled they could live with the additional $100 million-plus cut to overseas Ebola aid.
Democrats on the Appropriations Committee had engaged in talks about the offsetting cuts, but top Democrats like Minority Leader Harry Reid of Nevada adopted a harder line that ultimately prevailed. Reid and his top lieutenants issued statements blasting the GOP measure, and appear comfortable at the prospect of killing it.
What might happen if Senate Democrats are united behind a filibuster is uncertain. But time to pass the measure to provide money to battle the virus, which can be spread by mosquitoes common in much of the U.S., is slipping away as Congress is slated to recess for the party political conventions in mid-July.
The Zika funding was attached to an $82 billion measure funding the Department of Veterans Affairs and military construction projects. That measure is among the most popular of the 12 annual appropriations bills, and Republicans held out hope that its popularity might break free enough Democrats for it to squeak through the Senate.
More than 2,200 cases of Zika infection have been reported in the U.S. and its territories, especially Puerto Rico— including more than 400 pregnant women at risk of babies with major deformities like microcephaly, a condition in which babies are born with smaller brains that might not have developed properly. Thus far, there have been no cases of mosquito-borne Zika in the U.S., but public health official fear isolated outbreaks, especially in the South.
The veterans funding portion of the measure also contains a modified provision to permit combat veterans whose wounds have left them unable to conceive children to seek in-vitro fertilization treatments. But it would not permit the use of donor eggs and sperm to help veterans with the most severe injuries to their sexual organs have children.
GOP leaders also orchestrated removal of a House-passed provision that would ban the display of the Confederate flag over mass graves in VA cemeteries. Top Republicans such as Majority Leader Kevin McCarthy of California had initially supported the idea.
Left: A health worker prepares insecticide before fumigating a neighborhood in San Juan, Puerto Rico. Photo by Alvin Baez/REUTERS
orlando mass shooting
@APAndrewTaylor


Ninja Theory's dark action-adventure Hellblade: Senua's Sacrifice might be coming to the Xbox One, according to a leak that was posted on Reddit.
The image, posted by a user named kokokko416, shows Hellblade listed for the Xbox One on a Taiwanese game software rating regulations website, complete with Xbox boxart and all. The released date is "unlisted."
While no official announcement has been made, the same website has accidentally outed games previously in the past. Currently, Hellblade is only available for PlayStation 4 and PC.
Hellblade was received very well by critics and gamers alike when it released in August 2017. The title has a dark story as it deals with the main character's mental illness and the struggle that comes with it.
It would be a big get for Xbox if this listing turned out to be true, as any loss of a console exclusive for PlayStation would be a win for Microsoft, and vice versa.


Completion of a college program in broadcast technology or electronics is usually required.
Senior and supervisory positions in this unit group require experience.
Broadcast technicians install, set up, test, operate and repair electronic equipment used to record and transmit live and taped radio and television programs and to produce audio and video streaming broadcasts for the Internet. They are employed by radio and television broadcasting networks and stations, by broadcast equipment companies and by Internet-based communication providers.
May supervise other broadcast technicians.


Milford Sound. Is it better to take a coach trip or to drive to Milford Sound yourself?
Lived in Queenstown since 2009 and a keen hiker, skier and outdoor photographer!
Reasons for not driving yourself to Milford Sound….
The Milford Road is quite treacherous in Spring, Autumn and Winter, actually anytime of year. Coupled with avalanche risk, black ice and windy steep roads it can be quite dangerous. All registered tour drivers have a very special Milford Road accreditation!
So what if the road closes?
Well guess what, the company is in constant contact with the NZ Transit Agency, so if the road closes they will know at once. It'll save you getting to Te Anau and having to turn around.
But is snowy all right sometimes?
Of course. And beautiful. Absolutely stunning from Queenstown to Milford. Leave the driving to the experts and you can stare out the window all day at the magical landscape.
Good question. Lots of stuff. But if you drive yourself, NONE of it will make sense. You will just be staring at stuff. With a full commentary the experienced and informative drivers will tell you all about the history, the wildlife, the fungi and fauna, and probs crack a few funnies on the way to entertain you.
So once again, what will you see?
Lots of stuff. Lots and lots. And there is some real cool places to pull over and see stuff too. But who will know where to pull in? That's right, the drivers! Cool!
Won't you be late with all those stops and stuff? Not at all. Perfect timing. The tour company Kiwi Discovery pulls up at the Milford Terminal and gets you on an awesome 2 hour nature cruise! One of the very few nature cruises in Milford!
But you can book a cruise yourself, right?
Of course. But read the above. You could book a cruise for 1pm, you'd have to check in at 12:30. You make lots of stops on the way and find yourself having to power through the last part of the road missing EVERYTHING!
If you don't book a cruise in advance, what happens if you get there and there ain't a cruise leaving for ages? You wait. Or the cruises are fully booked? You'll have to come back another day.
It's gonna be cheaper though right?
Think again bro. It's like, a billion dollars or something for a cruise (well, upwards from $70ish). And you're driving a squillion k's (well, about 500ish). How much is a tank of fuel? Bucketloads!
So if you can think of any more reasons, let us know, but for now the Milford Road is stunning. It's not just a long coach ride for a 2 hour cruise, it's a scenic journey into stunning Fiordland. Let us do the driving so we can introduce it all to you.


Help Desk Intern (Part Time)In this junior role on AlixPartners' Corporate Services Information Technology team, a successful Help Desk Technician Intern will assist in the support of approximately 2000 employees in a 1st line support role. This involves providing phone, email, and in-person support on all technical matters that come into the Help Desk. The candidate will work as part of a growing team. Clear communication, teamwork and professionalism are key core values that this candidate would need to display. Strong customer services skills and attention to detail will aid the candidate in being successful in the role.The Help Desk Intern (known internally as Service Desk Intern) is a part-time role located in Southfield, Michigan, reporting to the Lead Support Engineer. Paid relocation is not available.Role is approximately 20 - 24 hours per week, Monday through Friday. Key Responsibilities:•Answer and respond to phone calls made into the Help Desk•Identify, diagnose, and resolve problems for staff using IT equipment•Provide one-on-one end-user problem resolution over the phone or by email•Provision laptop PC builds•Administer mobile technology (not limited to) iOS and Mobile Iron•Maintain and ensure accuracy of all asset information for all PC's, printers, mobile phones, monitors and defined peripherals•Identify issues and escalate to other members of the team or IT group as appropriate•Create documentation to assist in day-to-day Help Desk work (knowledge bases etc.)•Additional duties as identified Qualifications/Requirements:•Actively enrolled in or recently completed an IT related program•Interest in Microsoft applications and operating systems (Windows 7)•Desktop and laptop PC's, printers and networking knowledge; knowledge of iOS•Highly effective interpersonal skills•Dependable with strong customer service skills•Strong verbal and written communication skills•Good planning and organizational skills with high level attention to detail•Tolerant of high stress situations in a fast-paced environment•Willing to learn and adaptable with a "can do" attitude•Fluent in English; other languages useful•Must be able to work in an office environment and be physically able to sit/stand at a computer and work in front of a computer screen for significant portions of the work dayThis description is not designed to encompass a comprehensive listing of required activities, duties or responsibilities.AlixPartners is a results-driven global consulting firm that specializes in helping businesses successfully address their most complex and critical challenges. AlixPartners is a proud Silver award-winning Veteran Friendly Employer.https://www.dol.gov/ofccp/regs/complianceostersdf/OFCCP_EEO_Supplement_Final_JRF_QA_508c.pdfAlixPartners is a global firm of senior business and consulting professionals that specializes in improving corporate financial and operational performance, executing corporate turnarounds and providing litigation consulting and forensic accounting services when it really matters – in urgent, high-impact situations. More information is available at www.alixpartners.com. All qualified applicants will receive consideration for employment without regard to among other things, race, color, religion, , orientation, gender identity, national origin, (age), status as a protected veteran, or disability. AlixPartners is a proud Bronze award-winning Veteran Friendly Employer.


text:
//
// -------------------------------------------------------------------------

#ifndef NFI_WORLDNET_CLIENTMODULE_H
#define NFI_WORLDNET_CLIENTMODULE_H

#include <iostream>
#include "NFIModule.h"
#include "NFINetModule.h"
#include "NFINetClientModule.hpp"

class NFIWorldToMasterModule
	: public  NFIModule
{
public:
	virtual NFINetClientModule* GetNetClientModule() = 0;
	virtual void AddServerInfoExt(const std::string& key, const std::string& value) = 0;
};

#endif

redpajama_set_name: RedPajamaGithub


13 axle bridge dolly system with 39" deck height; lowboys to 90 ton, 42' well, 18" height to 50 ton. Rear steerable lowboys to 90 ton; flats, single & double drops, stretch trailers.6 and 3 axle steerable dollies available. 16 axle dolly system with 39" ride height.


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This matter came before the Board of Appeals (the "Board") at the request of Congregation Sha'aray Shalom (the "Applicant") for an administrative review or a "Dover Determination" of a proposed ground sign at 1112 Main Street in Residence District B.
The Board reviewed the request during a duly noticed public meeting on June 29, 2015 in Hingham Town Hall, 210 Central Street. The Board panel consisted of its regular members W. Tod McGrath, Chairman, and Joseph W. Freeman and associate member Alan Kearney. During the meeting, the Applicant was represented by Grace Strake. At the conclusion of this subsequent meeting, the Board voted unanimously to approve the proposed sign.
Throughout its deliberations, the Board has been mindful of the statements of the Applicant and the comments of the general public, all as made or received at the public meeting.
The Applicant plans to replace its existing ground sign at 1112 Main Street in Residence District B. Section V-B of the Zoning By-Law permits ground signs between 4 SF and 20 SF by special permit in residential districts; however, signs of this size are required to be set back 15' from the front property line. The maximum permissible height of a ground sign in all residential districts is also 6'.
The Board granted a Special Permit A1 and Variance to the Applicant in 1984, permitting the present ground sign to be located 2' from the front property line. The decision included a condition that the sign could not exceed 12 SF in size. Congregation Sha'aray Shalom now seeks approval to install a 7.5' high ground sign with a 20 SF double-sided panel in the same location.
The Applicant, as a religious institution, is considered a protected use pursuant to MGL c. 40A, § 3. For this reason, the Board determined that variance and special permit standards are not appropriate tools to assess the proposed modification. The Hingham Zoning By-Law delegates review of exempt uses, and particularly the structures or land that support these uses, to the Planning Board (Section III-B, 8.). Since the definition of structure specifically exempts signs, the Zoning Board maintains jurisdiction over the review.
The Board discussed during the meeting whether the required setback and maximum height would be unreasonable regulations as applied to this Applicant. Members noted that the right-of-way in this portion of Main Street is significant in terms of width and the sign would in fact be located more than 40' from the paved portion of the road. The proposed size, which is permissible in the district, and height, which is only modestly taller than that permitted, were considered reasonable in this location given the distance to the traveled portion of Main Street. Members also agreed that the sign is consistent with other institutional users in the neighborhood.
After review of the information presented during the meeting, the Board determined that the setback and height limitations specified in Section V-B of the By-Law for ground signs in residential districts, if applied to the subject property, would be an unreasonable regulation of a protected religious use. Upon a motion made by Joseph W. Freeman and seconded by A. Kearney, the Board then voted unanimously to approve the 20 SF sign as presented by the applicant, subject to the following conditions:
1.	The Applicant shall locate the proposed sign no closer than 2' from the front property line as approved by the 1984 variance.
For The Board of Appeals,
W. Tod McGrath


text:
John S. Gibson Jr. (August 11, 1902 – April 22, 1987) was an American politician, whose career spanned many decades and two states. A member of the Democratic Party from San Pedro, Gibson served on the Los Angeles City Council for the 15th district from 1951 and 1981, and did two lengthy stints as its president. Earlier in his life, Gibson's tenure as Mayor of Geneseo, Kansas made him the youngest elected mayor in the nation at the time.

Despite being politically powerful in San Pedro, Gibson ran at least three times unsuccessfully for other offices. In 1957, Gibson ran for Mayor of Los Angeles, but did not qualify for the ballot. He ran for Los Angeles County Assessor in 1962 and for the United States House of Representatives in 1968.

Early life and education
Gibson was born on August 11, 1902, in Geneseo, Kansas, the son of John S. Gibson of Constantine, Michigan, and Flora Dix Gibson of Lynn, Massachusetts, Gibson graduated from Geneseo High School and the University of Kansas.

Mayor of Geneseo, Kansas
After high school, he worked in his father's bank and at age 21 became the mayor of the small town of Geneseo, Kansas, the youngest municipal executive at that time ever to serve in the United States. "On the second floor of City Hall was the council and the judge's chambers," he told a reporter in 1975. "When the judge died I served in his place for about a year because I was also the mayor."

Career
Gibson moved with his wife and children to California in 1926 or 1927, where he worked for his father-in-law's Long Beach dairy for a year before relocating to San Pedro, Los Angeles in 1928. He graduated from the American Institute of Banking and became president of the Citizens Bank there in 1930 and a general contractor in 1941.

Philanthropy
In 1951 he was on the board of the San Pedro YMCA, director of the Pacific Southwest Region of Youth for Christ, chairman of the board of the First Baptist Church of San Pedro, treasurer of the Harbor Association of Evangelicals and a member of the Christian Businessmen's Association. He founded California's first Boys Club in San Pedro. He was a hunter and fisherman and, as a council member, regularly sponsored a fishing derby at the Los Angeles Harbor for local children.

Los Angeles City Council (1951–1981)

Elections

In 1951 Gibson successfully challenged George H. Moore, the incumbent, in Los Angeles City Council District 15,  winning by 10,555 votes to 9,514 in the final vote. Pat Russell tried unsuccessfully to unseat Gibson as council president in 1975.

In the 1977 election, the Municipal Elections Committee of Los Angeles (MECLA), a homosexual-rights group, put $5,000 into the campaign of Jim Stanberry, enough to force Gibson into an unaccustomed runoff election. Gibson responded to this unusual challenge by attacking Stanberry for accepting the money and for his membership in the left-wing Peace and Freedom Party. In the final vote, Gibson won with 2,748 votes to Stanberry's 1,123.

Gibson held the third-longest incumbency of any Los Angeles City Council member—30 years, after Ernani Bernardi's 32 years and John Ferraro's 35 years.

Positions

Though he often described himself as a "conservative Democrat," when he was first named president of the City Council in 1953 he was identified as a part of the "so-called liberal bloc," and he appointed other such councilmen—like Gordon Hahn, who broke a 7–7 tie to vote for Gibson as president—to chair the most important committees of the council. He was said to be "a liberal joining a very conservative council."

He "loathed laws and regulations that he felt hampered free enterprise, and his pro-business, pro-growth views often angered environmentalists and tenants seeking protection through rent control and condominium conversion ordinances."

Gibson was frequently described as a "nice guy," with an "easygoing, affable manner" and a "folksy sense of humor," but he could also be cantankerous and vindictive, the Los Angeles Times remarked editorially, as when he stripped Pat Russell and Marvin Braude of their committee positions in 1975 and "assign[ed] them to obscure and unimportant panels"  after the two of them had opposed Gibson's bid for reelection as council president.

He was a self-described religious fundamentalist who "made no attempt to separate his religious beliefs from his politics." He admired Billy Graham and said he never attended a council meeting without first saying a prayer. He said his favorite Bible verse was Galatians 6:2-3, "Bear one another's burdens, and so fulfill the law of Christ. For if any one thinks he is something, when he is nothing, he deceives himself" a quotation read to him by his mother when he became mayor of Geneseo, Kansas.

He blocked a community plan for San Pedro for nearly twenty years "because he opposed government-mandated controls on growth." In 1973 he agreed with Councilman Billy G. Mills that the city was following planning policies that ignored housing for the poor and that would result in "larger inner-city ghettos." He objected to policies that allowed large lots in more affluent parts of town but, he said, concentrated apartments in the poorer sections.

He was the only City Council member who did not use a private office but preferred to work "elbow-to-elbow with his staff in a large City Hall room, generally in his shirt sleeves."

In 1975 he said he was upset by laws that would reduce penalties for possession of marijuana. He added:

Permissiveness is destroying the morality of the young people and contributes to rising crime. I don't claim to be sinless, but as long as I breathe a breath I shall do my best to at least all people's attention to these matters.

Gibson played a key role in bringing the Dodgers baseball club from Brooklyn to Chavez Ravine in Los Angeles.

Presidency
Gibson set a record of sixteen years as City Council president (1953–61 and 1969–77), leading his colleagues to designate him as president emeritus when he retired from the council in 1981, the only person ever honored in that way. He was thus acting mayor when Norris Poulson or Sam Yorty was out of the city.

With Yorty out of town on a European trip, it fell to Gibson to deal with the city's response to the Watts Riots of 1965. He was also left to handle a 1973 energy crisis. His "calm handling of those crises won him respect—and an unofficial title as the city's 'panic mayor.' "

He at one point ordered the locking of exits from the council chamber and the posting of police guards to prevent the possible breaking of a quorum.

Personal life
Gibson was married on January 16, 1923, to Mina Workman of Lyons, Kansas. They had two daughters, Marlyn Irene Buehler and Florene Dix Blackwelder.

Gibson suffered a heart attack in 1974, but "it was his wife's death in 1978 that seemed to take the biggest toll." He died at his home on April 22, 1987, when he was recuperating from hip surgery. Funeral services were held at the First Baptist Church in San Pedro, and interment was at Green Hills Memorial Park on the Palos Verdes Peninsula.

Legacy
In his honor, several landmarks in the 15th district bear his name. In 1973,  the council unanimously voted to name a boulevard near the Port of Los Angeles after him. In 1977 a small park in front of the Los Angeles Maritime Museum at the corner of S. Harbor and 6th street was given his name, and in 1984, the municipal building ("city hall") of San Pedro was also named for him.

References
Access to some of the Los Angeles Times links may require the use of a library card.

External links
 Website with pictures of the Naval Monument located in the John S. Gibson Jr Park

1902 births
1987 deaths
California Democrats
Presidents of the Los Angeles City Council
Mayors of places in Kansas
Kansas Democrats
20th-century American politicians
People from Rice County, Kansas

redpajama_set_name: RedPajamaWikipedia


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How Patient Organizations Can Drive FAIR Data Efforts to Facilitate Research and Health Care: A Report of the Virtual Second International Meeting on Duchenne Data Sharing, March 3, 2021
Article type: Meeting Report
Authors: van Lin, Nawela; e; * | Paliouras, Georgiosb; c | Vroom, Elizabetha; d | 't Hoen, Peter A.C.e | Roos, Marcof
Affiliations: [a] Duchenne Parent Project, Veenendaal, The Netherlands | [b] Duchenne Data Foundation, Veenendaal, The Netherlands | [c] National Centre for Scientific Research, "Demokritos", Agia Paraskevi, Greece | [d] World Duchenne Organization UPPMD, Veenendaal, The Netherlands | [e] Center for Molecular and Biomolecular Informatics, Radboud Institute for Molecular Life Sciences, Radboud University Medical Center, Nijmegen, The Netherlands | [f] Department of Human Genetics, Leiden University Medical Center, Leiden, The Netherlands
Correspondence: [*] Correspondence to: Nawel van Lin, Landjuweel 34, 3905PG Veenendaal, The Netherlands. Tel.: +31 20 627 5062; E-mail: [email protected].
Keywords: Duchenne muscular dystrophy, Becker muscular dystrophy, rare diseases, FAIR data principles, data sharing, data visiting, big data, data analytics
DOI: 10.3233/JND-210721
Journal: Journal of Neuromuscular Diseases, vol. 8, no. 6, pp. 1097-1108, 2021
For patients with rare diseases such as Duchenne and Becker muscular dystrophy (DMD/BMD), access to their health data is key to being able to advocate for themselves and be in control of their care. Since 2018, the DMD/BMD patient community has been committed to making DMD/BMD-related data FAIR, i.e., Findable, Accessible, Interoperable, and Reusable. On March 3, 2021, the second international meeting on FAIR data sharing for DMD/BMD was held virtually.
The aim of this meeting report is to summarize the presentations and discussions of the meeting.
During this meeting, the progress of FAIRification efforts since the first international meeting in 2019, new developments, stakeholder perspectives, and experiences from implementing FAIR data principles in practice were presented and discussed.
Over 120 attendees representing various stakeholder groups (ie, patient organizations, clinicians, clinical and academic researchers, pharmaceutical companies, regulators, and EU organizations) from 22 countries participated in the meeting. This meeting report summarizes the presentations and discussions from the meeting, provides an overview of the key lessons learned since the first meeting, and outlines the next steps.
Patient organizations are key drivers of the FAIRification process in practice and dialogue with stakeholders is critical to success.
They say knowledge is power. For patients with rare diseases such as Duchenne and Becker muscular dystrophy (DMD/BMD) and their caregivers, knowledge means accurate and timely diagnosis, effective health care and treatment, and an independent and productive life ("actionable knowledge"). Knowledge also means successful advocacy and empowerment.
The reality for patients with DMD/BMD is that from the moment of diagnosis, they are seen by many different medical specialists and healthcare professionals. Consequently, a wide range of health data is produced, encompassing results from diagnostic tests, genetic tests, and physical examination; data related to activity of daily living (ADL) such as the use of assistive devices and participation; patient-reported outcomes (PROs) in response to received care and treatment; treatment history; and participation in clinical trials. These data are often kept in many different data systems and their (re)use is prevented by prevailing silo mentalities and issues such as ownership, control, legislation, data protection, and data security. Data are formatted for one type of use and understood by a single user or a small group of users, which impedes the data's use beyond this scope. This limitation interferes with the discovery of new diagnostics, treatments, and health care policies to benefit patients with DMD/BMD. It also hampers the use of data by patients themselves.
The adoption of FAIR data practices to make data Findable, Accessible, Interoperable and Reusable for humans and computers by all stakeholders who build, manage, and own these data systems can address this usage problem. Making data readable by both humans and machines (ie, machines knowing what our data mean) can be achieved by special software and "knowledge representation" technology. This enables efficient and real-time analysis across multiple data sources without moving data [1]. It also allows us to specify and control (1) what type of data queries can be made within a given source of data and by whom, and (2) what data (e.g., the results of queries) can be seen outside of the source. Specifically, an algorithm may have permission to calculate summary data from all pseudonymized data inside a data source, but only deidentified and aggregated summary data are allowed to leave the source for human inspection. Applying knowledge representation technology during a FAIRification process makes conditions for access transparent and assessable and facilitates compliance with the General Data Protection Regulation (GDPR; for more on this see Landi et al. [2] and Brewster et al. [3]). Consequently, FAIR data can be used appropriately by researchers, health care providers, regulators, family members, and patients to accelerate discoveries for early diagnosis and innovative treatments. Furthermore, FAIR data enables treatments to be personalized to the needs of individual patients. This is ultimately what patients with DMD/BMD want [4].
In 2018, members of the DMD/BMD patient community (the Dutch Duchenne Parent Project, World Duchenne Organization, and the Duchenne Data Foundation) came together to address accessibility issues with respect to their own health data. Patients raised concerns about the barriers that prevent researchers, health care providers, policy makers, and regulatory authorities from (re)using DMD/BMD related data for the benefit of all those suffering from DMD/BMD. This resulted in two actions.
First, the DMD/BMD patient community defined their position regarding DMD/BMD-related data. Namely, they stated their support for (1) optimal (re)use of data collected from different DMD/BMD data sources; (2) collection of PROs; (3) access to placebo data from clinical trials; (4) returning clinical trial data to participants; (5) giving patients the right to decide how their data are used; and (6) viewing GDPR as a catalyst that allows patients who are willing and interested to share their data [4, 5].
Second, the DMD/BMD patient community made a commitment to make DMD/BMD-related data FAIR. This commitment led to the first international meeting on FAIR data sharing for DMD/BMD in 2019, which aimed to inform the stakeholders in the community about FAIR data principles and the benefits of implementing them in practice [4, 6]. Following this meeting, DMD/BMD patient organizations established collaborative relationships with FAIR data experts, and became involved in FAIR-related projects (e.g., Brain Involvement in Dystrophinopathies [BIND], the Duchenne Data Platform, and the European Reference Network for neuromuscular diseases [EURO-NMD] registry hub).
On March 3, 2021, the second international meeting on DMD/BMD data sharing took place virtually. This meeting reflected the DMD/BMD patient community's continuing belief in the power of linking health data. The purpose of the meeting was to provide an update on the progress of FAIR data implementation projects since 2019, to inform the community of the latest FAIR developments, share stakeholder perspectives on and experiences in implementing FAIR in practice, and discuss future steps. Speakers and attendees included representatives of DMD/BMD patient organizations, the European Medical Agency (EMA), Rare Diseases Europe (EURORDIS), and the European Joint Research Programme on Rare Diseases (EJP-RD); clinicians and clinician-researchers; pharmaceutical companies; and FAIR data experts, researchers, and consultants. There were 128 attendees from 22 countries (i.e. Argentina, Belgium, Brazil, Canada, Czech Republic, Chili, France, Germany, Greece, Netherlands, USA, UK, Israel, Italy, Serbia, Spain, Turkey, Kenya, Mexico, Poland, Ukraine, and Norway). A video recording of the meeting is available online [7].
The aim of this report is to summarize the speakers' presentations and discussions among speakers and attendees during the meeting. By doing so, we hope to engage more stakeholders in making DMD/BMD data FAIR, accelerate discoveries to benefit the health and wellness of patients with DMD/BMD, and facilitate efforts by patient organizations for other rare diseases. To facilitate readability, we divided the report into the following six thematic sections that were discussed across the sessions of the original meeting schedule: (1) new initiatives in DMD/BMD data collection; (2) implementing FAIR data principles in practice; (3) building a solid ecosystem for DMD/BMD data sharing; (4) lessons learned; (5) next steps; and (6) final remarks. Also, as FAIR data sharing is a relatively new development, where concepts may be unfamiliar or too technical, we added some clarification. There were no controversial discussions where opinions were conflicting. For an overview of the speakers and their presentations in the chronological order during the meeting, please refer to Supplementary Table 1.
NEW INITIATIVES IN DMD/BMD DATA COLLECTION
Since 2019, three initiatives to develop DMD/BMD-related data collection systems based on FAIR data principles have been launched. Two initiatives are related to patient-empowered registries by DMD/BMD patient organizations (i.e., the Parent Project Muscular Dystrophy in the USA and the Duchenne Parent Project in The Netherlands). The third is a data repository to connect multiple sources that store DMD/BMD-related data created by the Duchenne Data Foundation. The speakers were Ryan Fisher (Parent Project Muscular Dystrophy, USA), Elizabeth Vroom (World Duchenne Organization, The Netherlands), and Georgios Paliouras (Duchenne Data Foundation, Greece).
Patient-empowered registries
Patient-empowered registries allow patients and their caregivers to enter and access their health data as they wish. In addition, patients may determine which data may be accessed and used by others. Examples of data that may be captured in patient-empowered registries include data from genetic studies, medical visits to specialists and paramedical professionals, eHealth medical record data, clinical trial data, wearables, PROs, and ADL.
Ryan Fischer described how the efforts of the Parent Project Muscular Dystrophy in the USA to make DMD/BMD data FAIR have been facilitated by new federal legislation (The 21st Century Cures Act) that defined interoperability of data and prohibited information blocking [8–10]. Currently, two consortiums (Duchenne Regulatory Science Consortium and the Collaborative Trajectory Analysis Project) aim to take natural history data and placebo-arm data from clinical trials out of their silos and develop DMD/BMD progression models. Furthermore, the Parent Project Muscular Dystrophy (in collaboration with Prometheus Research) is developing a data hub (Duchenne Outcomes Research Interchange) where data from its patient registry (e.g., PROs), eHealth records, and clinicians (i.e., postmarket data on therapeutics) can be combined. This will enable clinicians to create deidentified data sets to compare data across DMD/BMD clinics and gain insight into progression in DMD/BMD [11].
Elizabeth Vroom presented how since the 2019 meeting, the Duchenne Parent Project in The Netherlands established a dedicated technical team and started the process of developing its own patient-empowered registry (Duchenne Data Platform) based on the premise that patients own their own data, should collect data that are relevant to them (such that the platform can complement priorities defined by clinicians), and should support data to be as usable as possible under defined conditions [12]. In 2020, additional developments took place to transform the Duchenne Data Platform into a FAIR-enabling data source guided by FAIR data principles and FAIR experts. Within the data platform, patients have their own so-called virtual data locker that they can access through their cell phone or computer. By means of dynamic informed consent, patients can determine who has access to their data and when. Data elements inside the platform were made interoperable and machine-readable by annotating them with terms from global ontologies, partly reusing a knowledge representation model defined in a FAIR-related project by the EJP-RD. Consequently, third parties such as regulators, companies and research institutes are able to "visit" the data contained in the registry according to FAIR protocols. Moreover, the data platform offers patients the opportunity to make their own queries as "citizen researchers". Once the FAIR transformation of the platform is completed, it can be linked to other FAIR data sources such as the Duchenne Data Repository. Once the platform and the Duchenne Data Repository are linked, data-intensive research across multiple DMD/BMD-relevant resources will be possible and more efficient. Furthermore, in order to include patients with DMD/BMD from around the world and reduce the need for duplicate efforts by other DMD/BMD patient organizations, the soon-to-be FAIR Duchenne Data Platform has been translated into English, Spanish, and Dutch. The platform has also been designed with flexibility that allows the inclusion of country-specific items.
The Duchenne data repository
Georgios Paliouras described the creation of a FAIR by design Duchenne Data Repository, which began in 2020. The aim is to foster the convergence and integration of DMD/BMD-related data and metadata (information about the data) from all existing digital data sources around the world. Through virtual extensions and implemented interoperability to link with other DMD/BMD databases, users will be able to create new "virtual" data sets with data from multiple sources without physically moving data from the original sources. In addition, the user interface of the repository is designed as a collaborative environment, which will enable multiple users to work together, communicate, and share newly created data sets.
Summary of DMD/BMD patient community efforts
In summary, the DMD/BMD patient community has turned their commitment to FAIR data principles into action as demonstrated by the development of FAIR patient-empowered data platforms and a FAIR data repository. By (re)designing patient-empowered data platforms according to FAIR data principles, data from these platforms may be integrated and analyzed to (1) improve the DMD/BMD patient community's understanding of the different standards of care being offered to patients with DMD/BMD and inform health care policies; (2) provide insight into the natural history of DMD/BMD (including patient-relevant aspects such as the use of assistive devices and participation) and the inclusion of PROs as end points in clinical studies for new therapeutics; (3) recruit patients for clinical studies; (4) understand the real-world impact of therapeutics; and (5) provide DMD/BMD advocates with relevant data for discussions with regulators and policy makers.
IMPLEMENTING FAIR DATA PRINCIPLES IN PRACTICE
During meeting, the following leading FAIR data experts shared insights: Barend Mons (CODATA, The Netherlands), Peter-Bram't Hoen (Radboudumc, The Netherlands), and Marco Roos (LUMC, The Netherlands). Also, FAIR data consultants Bruna Dos Santos Vieira (Radboudumc, The Netherlands), Mark Wilkinson (BBVA-UPM, Spain), Mike Rose (CABI, UK), and Tony Burdett (FAIRplus, UK), and a FAIR project manager, Nawel van Lin (Duchenne Parent Project, The Netherlands) shared insights from experiences of implementing FAIR-related projects in practice (Supplementary Table 1). These insights related to required culture changes and recent/ongoing FAIRification projects.
Culture change to facilitate successful implementation
Marco Roos proposed that while endorsement of the FAIR principles by global organizations such as International Rare Diseases Research Consortium (IRDiRC) is an important step in facilitating implementation in practice, successful implementation ultimately depends on transforming the current silo-based data management culture. Such transformation needs to be triggered by so-called game changers who are committed to disrupting the status quo and championing a new endgame. In this new endgame, stakeholders' data usage is characterized by greater efficiency and creativity and addresses patient priorities. Given that stakeholders who are served well by the status quo are often resistant to change, the Rare Diseases Global Open FAIR implementation network (RDs GO FAIR) considers patient organizations to be prime candidates to act as game changers. In practice, our experience in the DMD/BMD community is that "FAIR project managers" employed by patient organizations are critical game changers. FAIR project managers serve as a critical link between (1) managers of data that should be reused (i.e., patient organizations and database software providers) and (2) data scientists who can make machines understand data for reuse. Moreover, through the FAIR project manager, patient organizations and thus patients, not only have a seat at the table, but drive the changes to ensure that their data can be reused as they wish. FAIR project managers also have a valuable role in increasing awareness about FAIR among stakeholders. For example, they can advocate to decision makers that the decision on which software provider to hire should be based on the condition that the software provider follows FAIR data principles.
Mike Rose identified another required culture change from experiences involving donor-funded data management projects such as those carried out by the intergovernmental, not-for-profit Centre of Agriculture and Bioscience International (CABI) [13]. When a funding agency decides to invest in data-based projects, the approach often involves focussing on the technology first, then looking at the workflow, and lastly, considering users of the system. In the end, these projects fail because this approach results in a system where data are left unused as the intended users cannot access data due to context-specific issues. The solution lies in reversing the process and adopting a "people first" approach to understand the unique background and context of the targeted users of the data management system; the workflow specifications and design of the technology follow thereafter. This means beginning by asking questions such as who will use the data, where is the data coming from, what are the contexts and beliefs of the people who have to share data, how do people interact with each other, how do they understand FAIR data principles, and what do the principles mean to them as individuals. The answers will shape the rules and processes that get set and help ensure that the implemented data management system reflects what the people want, which increases the chances of a project succeeding and leading to a return-on-investment.
Insights from FAIRification projects
First, Barend Mons presented insights from creating the Virus Outbreak Data Implementation Network (VODAN) at the onset of the COVID-19 pandemic [14]. This initiative has led to widespread recognition of the value of a FAIR-based data management network as VODAN has enabled researchers around the world to access data that are stored in multiple locations at any time. The FAIR-based data management network can be conceptualized as a federation of virtually linked data management systems, each of which acts as a "data station". Communication between the data stations occurs by means of computer-readable messages that metaphorically act as "trains" [15]. When a user has a question, a train with a computer-readable query visits each data station and assesses its metadata (information about the station and its data) to find, access, reuse relevant data, and compile an answer from one or more stations. Each data station is built with specifications as to what types of query-related algorithms are permitted and which results can be returned. As such, data remain at the source and are shared by visiting. Furthermore, the VODAN project, as well as others, are conducting proof-of-concept studies regarding dynamic informed consent by the patient. Findings from these studies will provide new insights about dynamic informed consent for patient-empowered registries.
Second, Peter-Bram 't Hoen shared insights from establishing a FAIR-based network of data for health care providers and expert centers on neuromuscular diseases at the European level through European Reference Networks (ERNs). ERNs are virtual networks of reference centers that patients can access through their local physicians to obtain specialist support for the diagnosis and treatment of complex or rare diseases and conditions (i.e., EURO-NMD). To establish this network, EURO-NMD is creating a data hub that links existing patient-related registries as a federation in order to answer questions such as "What are the differences in age at loss of ambulation as a result of steroid use in DMD/BMD patients across EU countries?" Connecting existing registries as a federation helps mitigate the redundancy problem associated with building a central database and moving all data into it. The aforementioned Duchenne Data Platform is one of the registries that will be linked to the EURO-NMD registry through FAIR protocols. The DMD/BMD patient community efforts can also benefit from experiences with federated machine-learning across FAIR data sources, such as in the Personal Health Train initiative; [16] the adoption of FAIR data principles by international infrastructures, such as ELIXIR, the European Open Science Cloud, and the European Health Data Space; [17, 18] the availability of reusable (meta)data standards and policies at www.FAIRsharing.org, [19] including a semantic model for common data elements in rare disease registries; and the development of machine-readable informed consent, generalized authentication and authorization mechanisms.
Third, Bruna Dos Santos Vieira discussed insights from a de novo FAIRification project. The European reference network for rare multisystematic vascular diseases created and launched a data registry called VASCA that was built using a de novo FAIRification process. With a de novo approach, data are made FAIR automatically upon collection within an electronic data capture system. Key aspects to successfully creating VASCA were the careful selection and definition of data variables, and a multidisciplinary team that included domain experts who could help semantic data model specialists interpret the meaning of the chosen data variables. Through VASCA, nine expert centers for rare multisystematic vascular diseases across Europe are connected as a federation; all nine have their own database where they enter, store, and maintain control of their data. The experience of creating a FAIR-based data registry and links to relevant resources such as a codebook for common data elements (CDEs) and the EJP-RD semantic model have been published and available to reuse by DMD/BMD patient organizations and other DMD/BMD stakeholders [20–24].
Fourth, Tony Burnett shared insights from FAIRplus, a European-level initiative by 22 partners from academia, companies and the European Federation of Pharmaceutical Industries and Associations (EFPIA). FAIRplus aims to implement FAIR data principles in the pharmaceutical industry and exploit the benefits of a federated approach to data management, sharing, and analysis. Specifically, FAIRplus aims to (1) create a practical guide on FAIRification best practices; (2) increase the FAIR levels of 20 Innovative Medicines Initiative (IMI)-sponsored projects and internal EFPIA data sets; (3) identify FAIRification approaches that work in the real world, including how to assess the FAIRness level of data at the start of a project; and (4) change the current data management culture in the pharmaceutical industry by ensuring that data collected in projects conducted by EFPIA and the IMI are "born" FAIR. FAIRplus also follows a people-first, agile, and reiterative approach that involves identifying the FAIRification goal, evaluating the starting point, designing change to close the gap between starting point and FAIRification goal, implementation of the change, and re-evaluation. Experiences from the FAIRplus initiative have uncovered the following needs: good case studies that demonstrate the return on investment of FAIRification efforts; practical methods to determine the extent of FAIRness at the start of a project and define the goal of the FAIRification process (i.e., is the goal data findability and accessibility or interoperability and reusability?) in order to target investment; and simple, general guidance as opposed to complex, detailed workflows.
Fifth, Nawel van Lin presented insights from the retrospective FAIRification of the patient-empowered Duchenne Data Platform. A retrospective approach was chosen as opposed to the de novo approach used to build the VASCA registry because the Duchenne patient registry was already in existence and well in use. The experience demonstrated that retrospective FAIRification is a journey of many steps. Keys to success were to ensure there was a core team of FAIR data experts and that collaboration with external experts was sought. The retrospective FAIRification process involved creating a data transformation workflow and developing new software to transform the existing patient registry data (which consisted mainly of PROs) into data that were FAIR. Existing international standards for FAIRification were used to save time and money and not reinvent the wheel. That is, the same minimal CDEs, EJP-RD semantic data and metadata models for CDEs created for the VASCA project were used in the FAIRification process of the Duchenne Data Platform, which in turn helped further improve the EJP-RD semantic model. This demonstrates a sustainable, circular approach and the reusability of FAIR artefacts. The next steps in the development of the platform are to improve the robustness and sustainability of the FAIR features of the platform, link the platform to other data sources, share practical information with other patient organizations that wish to FAIRify their registries, and encourage patient organizations that do not have their own registries to join existing FAIR efforts.
Last, Mark Wilkinson, who contributed to the development of the semantic models used in the VASCA and Duchenne Data Platform projects presented above, provided a retrospective of the development of FAIR before the seminal 2016 publication [1] and shared his perspectives from the earliest experiences with similar FAIRification projects. He reminded attendees of the foundation for FAIR being about "linking concepts, structures, and metadata to create a web of data and knowledge that could be understood and processed entirely by machines." He reinforced that the starting point is a generic workflow [25] where the unique details for each project can be integrated. His vision for the successful implementation of FAIR involves promoting multidisciplinary collaboration to continue transforming existing data models and encourage their adoption as standards at the European level through the EJP-RD.
Summary of implementation FAIR data principles in practice
In summary, while FAIRification refers to making data machine-readable, the implementation of FAIR data principles happens in a human context. This means the FAIRification process should begin with understanding the end users and their unique context. FAIR project managers are vital for disrupting silo-mentalities and driving the change towards FAIR data practices. They also have a key role in communicating patients' perspectives regarding data management, sharing, and protection of data. In addition, an agile approach and multidisciplinary teams are key to successful implementation. Similarly, combining efforts, establishing federations of data system networks, and reusing existing resources are key to sustainability and continued success of FAIR efforts. The developments related to machine-readable, dynamic informed consent (i.e., Data Use Ontology, ADA-M, and the Informed Consent Ontology) and data security will further support FAIRification efforts. Lastly, given that nearly 80%of a data scientist's time is spent on getting data into a usable form, [26] which can amount to 6-months of work in a FAIRification project, there is much to be gained in terms of time and cost-savings. Case studies to demonstrate return-on-investment to make data FAIR are needed but will first require a "critical mass" of FAIR data. Activating the organizational power of patient organizations, such as through FAIR project managers, will be an important step to achieve this goal.
BUILDING A SOLID ECOSYSTEM FOR DATA SHARING
Involving stakeholders in FAIRification efforts and addressing persistent misconceptions that stakeholders may have about FAIR data principles [1] are two key aspects of building a solid ecosystem for DMD/BMD data sharing. Clinicians, clinical researchers, regulatory authorities (eg, EMA) and organizations such as EURORDIS and EJP-RD are examples of key stakeholders in FAIR data efforts. Stakeholder perspectives were presented by Nathalie Goemans (University Hospitals Leuven, Belgium); Catherine Cohet (EMA, The Netherlands); Gulcin Gumus (EURORDIS, Spain); Daria Julkowska (EJP-RD, France); and Mary Wang (Fondazione Telethon, Italy).
Stakeholders' perspectives
First, Nathalie Goemans described how clinicians and clinical researchers who treat patients with DMD/BMD are involved in local data collection efforts within hospitals, national efforts in collaboration with national health insurance entities, and international efforts, such as the Translational Research in Europe for the Assessment and Treatment for Neuromuscular Disorders (TREAT-NMD). Benefits of FAIR data collection for clinicians and clinical researchers include (1) improved insight into disease evolution and variability, genetic distribution factors, and adherence to standards of care, which can in turn inspire innovations in diagnosis and treatment; and (2) the ability to inform new research studies, establish new collaborations, and develop benchmarks for clinical trial results. FAIR data principles provide a framework for addressing interoperability issues that are barriers to data sharing. Other barriers from the clinician's/clinical researcher's perspective that need to be addressed include (1) establishing a common data set, data dictionary, and standard operating procedures for assessment, which depends on open and ongoing dialogue and achieving consensus; (2) ensuring that data collection requirements do not cost clinicians extra time or interrupt their daily workflow; and (3) addressing concerns about data protection and ownership. In particular, strategies to address reluctance to share unpublished data and authorship issues need to be developed.
Second, Catherine Cohet described that, from the regulator's perspective, implementing FAIR data principles is one of the key steps in unlocking the potential of real-world data for public health in EU [27]. Enabling data discoverability will support efforts by EU member states, industry, and academia to improve the process of drug development and the performance of studies following market authorization. In practice, regulators require easy access to disease registries to gain knowledge about the disease itself (e.g., incidence/prevalence, natural history following the standard of care, unmet medical needs), as well as to valid real-world evidence about drug utilization, safety, and efficacy to inform regulatory decisions. In September 2015, EMA launched a patient registry initiative that is expected to be completed around the third quarter of 2021. One of the key objectives was to promote the dialogue between regulators, companies and registry holders to understand barriers and opportunities of using disease registries. Regulators expect that data from disease registries are (1) adequate (e.g., precision of effects, range of population characteristics that are covered, length of follow-up); (2) derived from sources of demonstrated good quality; (3) accurate; (4) valid (i.e., best epidemiological and statistical practices are followed); (5) consistent (e.g., across countries or data sources) or that differences can be explained; and (6) transparent, which includes knowing how people use the registries.
Third, Gulcin Gumus presented the activities of EURORDIS, which helps shape policies related to data sharing and data protection in research and health care for rare diseases through an evidence-based approach and advocacy. Findings from a recent survey demonstrated that 95%to 97%of patients with rare diseases, regardless of the severity of their disease and their socio-demographic profile, are willing to share their data but they want to have control over the data they are sharing; in comparison, the willingness of the general population to share data ranges from 37%to 80%[28]. Furthermore, EURORDIS established so-called European Patient Advocacy Groups (ePAG) in 2019 to ensure that patients' perspectives are represented in the research and registry activities conducted by European Reference Networks (ERNs). A special working group provides support and training to ePAGs through quarterly teleconferences to discuss issues related to the quality of rare disease registries and implementing FAIR principles, and webinars to share knowledge about FAIR data resources and initiatives. The next step for ePAGs is an initiative to increase the research and innovation capacity of ERNs by encouraging inter-ERN collaboration (through ERICA –European Rare dIsease research Coordination and support Action). Furthermore, EURORDIS has conducted a foresight study in which stakeholders were asked to propose policy recommendations that would lead to policy improvements and a better future for people living with rare diseases [29]. Recommendation 7 from the study was related to optimizing data for patients and societal benefit. Key components of this recommendation included that all European data sources should be linked together as a federation; "sharing of data for care and research [is] optimized across infrastructures and countries"; data ecosystems are linked through FAIR data principles; and practices related to data sharing should reflect the "preferences and privacy of people living with rare diseases and their families." Finally, EURORDIS launched a Rare Diseases GO-FAIR patient network in January 2021 to identify the needs of patient organizations and to be the single point of contact for developing patient-oriented FAIRification support.
Lastly, Daria Julkowska described how the EJP-RD contributes to building a solid FAIR data ecosystem through support schemes and a FAIR virtual platform of data, resources, and tools. With respect to support schemes, the EJP-RD provides funding to health care professionals, researchers, and patient advocacy organizations to establish or expand existing transnational (clinical) research networks. The EJP-RD also provides funding for research projects, research training workshops, and mobility fellowships; offers free training on, among others, data management and quality; and facilitates contact with dedicated experts in its network. The platform provides access to the following resources: experts in rare diseases, support for translational and clinical research, tools for research, registries and biobanks, animal models and cell lines, data disposition and analysis, and standards and methods. Also of interest are the findings of surveys that the EJP-RD performed as part of the virtual platform development. These findings were presented by Mary Wang. For example, survey respondents (i.e., researchers in academia and at ERNs) indicated that services which enable them to find data were more important than services which improved data management (e.g., annotating data with ontologies or standards, and data sharing), which may be reflective of their professional focus. Also, nearly half of the respondents did not sufficiently understand what FAIR research data meant and were often not aware of existing research infrastructures or resources. These findings highlight the need to demonstrate the importance of data management and to inform research stakeholders about existing infrastructures and resources so that these tools are not underutilized or unnecessarily duplicated.
Persistent misconceptions
One common misconception about FAIR is that it only facilitates humans in finding and accessing data. In actuality, FAIRification pertains to machines being able to read all types of data and machines knowing what humans mean by the data they create. If data are machine-readable, then machines can do the work of finding, accessing, and integrating data so that data are reusable by humans. Furthermore, contrary to what is commonly believed, the process of sharing data under FAIR principles does not entail the physical movement of data from the owner of the data. Rather, it involves sharing by means of allowing users to visit data virtually and conduct federated analyses without the data having to leave their original storage location. As such, owners of the data do not lose control or ownership of their data, which is a commonly reported fear behind the reluctance to share data. Moreover, FAIR data does not mean open data where data are freely available to the public without any safeguards. Under FAIR data principles, deidentified data are only accessible under specified conditions that conform with GDPR requirements for informed consent and data privacy and security.
It is also important to understand the difference between the quality of data and provenance of data (i.e., the record trail that accounts for the origin of a piece of data and background on how and why the data are in their present location). From the perspective of FAIR data principles, provenance of data is as important as the quality of data. The value of provenance is highlighted by the current reproducibility crisis, which is mainly due to researchers providing insufficient provenance information about methodological aspects such as workflows and versions of software to allow adequate replication. If such provenance information were available, FAIR data systems could allow users to filter data based on methods used and ask questions regarding the (methodological) quality behind the collected data.
Lastly, we should stress that FAIR is not the opposite of unfair. Similarly, striving to achieve 100%FAIRness per se may not necessarily be a constructive or relevant goal, as the focus should be on understanding the extent of FAIRification needed to achieve the practical goals of machines and people being able to reuse data. From a technological standpoint, it is always possible "to do better" but not always necessary for the situation at hand; that is, a simple solution may suffice and highly advanced ontologies may not always have added value. Thus, in this sense, FAIR is a dynamic concept that is context dependent.
Summary of building a solid ecosystem for data sharing
FAIR benefits all stakeholders. Ongoing dialogue among stakeholders –clinicians, researchers, regulators/policy makers, companies, patients/families/patient organizations –is key to building a solid ecosystem for DMD/BMD data sharing. Through dialogue, misconceptions can be corrected and engagement and collaboration among stakeholders can be strengthened.
KEY LESSONS LEARNED
From the experiences since the first FAIR DMD/BMD data sharing meeting in 2019, eight key lessons have been identified from the presentations and discussions during the meeting. These are summarized in Box 1.
1. DMD/BMD patient organizations are key drivers of implementing FAIR in practice and the dialogue between all stakeholders is critical.
2. Creating a FAIR patient registry is a journey of many steps which begins with establishing a core FAIR team with expertise from multiple disciplines (eg, domain experts, semantic data model specialists, FAIR project manager).
3. Existing international standards should be used so that time and money are not wasted on reinventing the wheel.
4. Instead of creating central databases and moving data into them, there is a need for federated data networks that allow data to be visited and processed according to appropriate access rules.
5. There are standard questions to ask during a FAIRification process, but the answers will always be different, reflecting the unique context of each situation. As such, general guidance works better than complicated workflows when implementing FAIR data principles in practice.
6. One cannot say whether prospective or retrospective FAIRification is better compared to the other. For example, in the situation where a well-running database and application system for users to enter data already exists, making small adjustments to the existing infrastructure (retrospective FAIRification) would make more sense than starting anew. Nevertheless, starting with FAIR from the start is easier to do than FAIR in hindsight.
7. While FAIRification refers to making data machine-readable, the implementation of FAIR data principles happens in a human context. This means FAIRification projects need to begin by clearly understanding the type of data end users wish to collect and how, as well as what their wishes regarding data analysis and reuse are.
8. FAIR project managers employed by patient organizations have a valuable role in increasing awareness about FAIR among stakeholders. They serve as a critical link between managers of data that should be reused, database software providers, and data scientists who can make machines understand data for reuse, ensuring that expectations are defined and solutions are found.
Summary of key lessons learned about implementing FAIR data principles in practice since the first Duchenne and Becker muscular dystrophy data sharing meeting in March 2019
• Patient organizations are key drivers of FAIRification and dialogue between all stakeholders is critical.
• The essential first step of any FAIRification process is establishing a core, multidisciplinary FAIR team.
• Use existing international standards so time and money are not wasted with reinventing the wheel.
• Federated networks with appropriate access rules, as opposed to central databases, are needed.
• FAIRification involves asking standard questions and working out the unique answers.
• While prospective FAIRification is easier than retrospective, but whether it is better depends on the project's context.
• Be sure to understand your end user's needs and context before designing and implementing any changes.
• FAIR Project Managers play a critical role in managing stakeholders' needs and expectations.
During the presentations and discussions, the following "next steps" regarding patient-empowered data registries were identified: (1) to encourage DMD/BMD patient organizations without patient registries to join the efforts of DMD/BMD data collection; (2) to safeguard that all patient-empowered registries can communicate with each other by sharing experiences and solutions so that they can be reused (e.g., through www.FAIRsharing.org); (3) to explore the possibility to identifying a core data set (including PROs) while recognizing limitations due to country-specific contexts; (4) to ensure that patients truly understand what they are consenting to when giving informed consent and participate in the further development and use of dynamic informed consent; (5) to ensure data entry procedures for the registries reflect the preferences of the patients; (6) to develop strategies to facilitate longitudinal data collection; (7) to continue to be aware of country-specific legal requirements for privacy and data usage while ensuring data accessibility; and (8) to further improve the interconnection of DMD/BMD data sources.
Finally, the next steps identified with respect to facilitating the implementation of FAIR data principles in the DMD/BMD data ecosystem were (1) to develop and disseminate best practices that provide guidance on how to determine the degree of FAIRness at the start of a project and define the target goal; (2) to collect case studies to demonstrate the business case and return-on investment for implementing FAIR data principles in practice; (3) to demand that software providers follow FAIR principles; (4) to establish real-world data as a source of evidence; (5) to ensure data are of known quality and representativeness; (6) to continue to advance machine-readable informed consent, generalized authentication, and authorization mechanisms; (7) to continue to engage and promote dialogue among stakeholders including patient organizations; (8) to continue to address persistent misconceptions about FAIR data, and in particular the fears regarding loss of ownership or control of data; (9) to develop strategies to facilitate scalability in practice. For example, in the clinical setting, FAIRification should be embedded in the software of data systems so that the usual workflow of clinicians is not disrupted by extra documentation (data collection) requirements; and (10) continue to increase awareness about FAIR data stewardship.
Since the first FAIR data sharing meeting in 2019, the DMD/BMD patient community has made considerable progress toward its goal of making DMD/BMD-related data FAIR. The DMD/BMD patient community is a pioneer among rare diseases when it comes to seeking collaborative solutions with its stakeholders. Patient organizations along with FAIR project managers are essential drivers of FAIRification and are key to ensuring that stakeholders do not lose sight of the ultimate goal of improving diagnosis, treatments, and health care policies to benefit patients with DMD/BMD.
We would like to express our gratitude to all the speakers, moderator, and attendees for their enthusiastic participation in this meeting, and their support of the Duchenne FAIR data endeavor. We thank the Duchenne Data Foundation for financial support to hold this meeting and to create the FAIR animation video entitled, "FAIR for Duchenne data (what Justus wants)" (https://www.youtube.com/watch?v=MHZ377PsHZ4). Lastly, we thank Kimi Uegaki, PhD (iWrite) for her assistance with preparing the manuscript.
Nawel van Lin, Georgios Paliouras, Marco Roos, and Peter A.C. 't Hoen declare that they do not have any conflicts of interest. Elizabeth Vroom is the CEO of the Dutch Duchenne Parent Project and sponsors the Duchenne FAIR project.
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