Appendix C: Workshop discussions Bipolar workshop Key Issues Challenges Strategies Other 1: Governance and Ethics Data Protection Accessibility to record Strong DP structure in within EHRs Long discussion Governance Structure Definition of who has Patient driven, public consultation regarding Ethics access Education of the public regarding ownership and Degree of confidentiality measures in place (media highlight access. Who Consent breaches only) grants access? Accountability Compliance with HIQA IT & DP standards Who decides what Who owns the record? In terms of ownership and accessibility, a part of the EHR is Who can release the much bigger forum is required to discuss accessible? record to parties? this issue. We suggest getting all Who requires the stakeholders together in order to decide information? who determines ownership and access to Consent vs. duty of care records Capacity Legal framework Table 2: Consent, usage and confidentiality limits Invasive technology Security issues with paper Testing Responsibility to – brother” Anonymity GOMO (behavioural technology) follow-up “big What benefit are speaker” closed Look at other countries (USA) Impact of mood “Every wearable technologies Facebook Telephone and video Design of consent to patient? Consent give / Educate at start of project (Broad or narrow) – What happens to withdraw Ethical approval of data? Consent mental health consent forms if – Reassurance Legal implications process is Data Protection Health Insurance Table 3: Service user perceptions and expectations of the EHR Key information at Consent Identifying information No specific BPAD of care Key information Portal issue of EHR Consent during mania Scaling pilots / hypermania Specific issues in context Access to information on-call Access to care plan Linking existing Defining use cases Self-monitoring information High need/high use service users will – what is the cut-off for have wider EHR content intervention? Medication monitoring Table 4: Clinical engagement: general practice and nursing expectations of the EHR Business and Education of illness Electronic health record / clinical uses practice Evolution of care in ages Key information given Who has access to it? of patients Video or text interactions Informed consent Accessible for all ages Support via patients engagements Medication management Appointment mood Security access – records Table 5: IT challenges and online security Confidentiality opt-in Data to the right people Enabling carers Health Information at the right time Telemedicine Bill Linking apps to clinical Very simple to use engagement
Appendix C: Workshop discussions Bipolar workshop Key Issues Challenges Strategies Other 1: Governance and Ethics Data Protection Governance Structure Ethics Accessibility to record Definition of who has access Degree of confidentiality Consent Accountability Who owns the record? Who can release the record to parties? Who requires the information? Consent vs. duty of care Capacity Strong DP structure in within EHRs Patient driven, public consultation Education of the public regarding measures in place (media highlight breaches only) Compliance with HIQA IT & DP standards In terms of ownership and accessibility, a much bigger forum is required to discuss this issue. We suggest getting all stakeholders together in order to decide who determines ownership and access to records Legal framework Long discussion regarding ownership and access. Who grants access? Who decides what part of the EHR is accessible? Table 2: Consent, usage and confidentiality limits Invasive technology – “big brother” What benefit are wearable technologies to patient? What happens to data? Reassurance Data Protection Security issues with paper Anonymity “Every speaker” closed Facebook Consent – give / withdraw Consent – mental health Legal implications Health Insurance Testing GOMO (behavioural technology) Look at other countries (USA) Telephone and video Educate at start of project Responsibility to follow-up Impact of mood Design of consent (Broad or narrow) Ethical approval of consent forms if process is Table 3: Service user perceptions and expectations of the EHR Key information at of care Consent during mania / hypermania Access to care plan Self-monitoring – what is the cut-off for intervention? Medication monitoring Consent Key information Scaling pilots Specific issues in context Linking existing information Identifying information Portal Access to information on-call Defining use cases High need/high use service users will have wider EHR content No specific BPAD issue of EHR Table 4: Clinical engagement: general practice and nursing expectations of the EHR Business and practice Who has access to it? Informed consent engagements Appointment – mood records Education of illness Evolution of care in ages of patients Accessible for all ages Medication management Security access Electronic health record / clinical uses Key information given Video or text interactions Support via patients Table 5: IT challenges and online security Confidentiality opt-in Health Information Bill Data to the right people at the right time Linking apps to clinical Enabling carers Telemedicine Very simple to use engagement