Patient Data Survey: Understanding Patient Perspectives and Priorities

1. Membership Surveyon ‘Patient Data'

2. 103 Deadline: Sunday, March 31, 2019 • Date Created: Wednesday, March 13, 2019 • Total Responses • Complete Responses: 101 Average time taken: 6 minutes, 50 seconds

3. Q1: Are you an IPPOSI member? • Answered: 101 Skipped: 0

4. Wordcloud of Member Organisations represented • No more than 3 from any individual organisation

5. Q3: Which of the following best describes you? • Answered: 102 Skipped: 1

6. Q3 breakdown: Non-Members • IPPOSI Members

7. Q4: How familiar are you with how patient data is currently collected, stored, shared and used to bring improvements to health care and/or for research purposes? • Answered: 103 Skipped: 0

8. Q5: To what extent to you agree with the following statements? • Answered: 103 Skipped: 0 It is important for patients to be able to manage their own personal health data (e.g. to be able to view test results, request referrals, share data with professionals and researchers via an electronic health record) I have a good understanding of what an Electronic Health Record is I have a good understanding of what a Summary Care Record is I am familiar with the government's eHealth Strategy The government has effectively engaged with patients and the public in pursuing its current eHealth agenda

9. Q6: To help us identify the 'Patient Data' topics of most interest to members, please indicate your interests from the list below, ranking 1-7, with 1 being the topic of most interest). Answered: 103 Skipped: 0 [ Figures represent number of responses ] Investigating the potential of data-driven technologies (e.g. genomic data, diagnostics, patient registries, artificial intelligence) Improving Data Quality & Infrastructure (e.g. 'Cleaning' of data, fragmented systems, outdated IT resources, burden on professionals) Addressing Trustworthiness in use of data (e.g. Commercial interest, Who benefits?, Effective regulation, Do no harm) Probing Data Privacy & Protection (The role & limits of consent, Levels of control, Personal nature of data, Confidentiality) Encouraging Public Dialogue (national level, empowering patients, building confidence, engaging 'seldom heard' Encouraging Collaboration between Sectors (calling for leadership, frameworks, guidelines, regulation between sectors) Providing clarity and clear messaging about patients' rights and whether data can be shared/used on a consent / opt-out basis

10. Q7: Are there any additional topics you would like IPPOSI to focus on? (1) • Patient Representation / Awareness • Patient preferences for eHealth initiatives. • Appropriate patient group representation to input into any National eHealth initiatives, pilots, proof of concept, strategy, framework development. • Increasing awareness on this issue - good practice examples, benefits to all etc • Service Planning • Utilising aggregate data for better future planning, trends, incidence/prevalence, demographic info, medication usage etc • Improving/ Linking patient data sources e.g. PCRS data to EHRs etc...." • Patient reported outcomes • Other • Importance of coding of disease groups and conditions to allow ease of data mining and electronic registries • Training staff on safe use of the records to ensure consistency and compliance GDPR / Health Research Regulations Impact of health research regulations. How to get consent from patients in healthcare setting for retrospective chart reviews for research before May 2019 deadline for data controllers to do this. GDPR The health research regulation and ensuring that the spirit of original patient consent is respected so that biobanks which pre-date the regulation but meet an appropriate standard of pre-GDPR consent are still viable Use of data for research purposes Easier use of anonymised patient data in research and dissemination of findings. Access to Data/Records Patient Portal Patients have access to their medical records and those of their children - electronically Easier access to / sharing data with expertise abroad if there is lack of knowledge in Ireland More constructive access for treating professionals across hospitals etc, while maintaining high spec confidentiality and data safety. Streamline patient access to records/data. Integration of Data / Records The lack of an integrated IT system between hospitals clearly leads to a lack of mobility of patient data, constricts ownership and limits a patients ability to make choices about their own treatment. At this stage Ireland is one of the only EU countries without an integrated IT system and relative national patient identifiers, which means that the roll out of new technologies such as Next Generation Sequencing, Artificial Intelligence etc will be very limited. Data Quality / Infrastructure / Interoperability Data infrastructure, IT architecture and interoperability. Data sharing is useless if it isn’t possible to use it because the systems don’t talk to each other. Ensuring correct data collection, robust systems to ensure accuracy of information. Linkage of datasets for epidemiology purposes and long term clinical care planning. Development of a 'core dataset' that is standard across all datasets (e.g., gender, age, ethnicity, GMS status, deprivation level as assessed by small area deprivation etc). Data that has both 'process' outcomes and clinical outcomes.

11. Q7: Are there any additional topics you would like IPPOSI to focus on? (2) • Create paid advocacy roles. Most patient advocates work full time while also providing care for themselves or their loved one, it's exhausting and not sustainable. • Patient access to clinical trials • Translation of clinical research to active treatment. • Having a conference relating to translational research for rare diseases. • Integrated care • Patient involvement in care • Building confidence within people re health research • Capacity to consent for younger or incapacitated individuals • How to improve patient access to clinical genetic centers (overhaul criteria for patient referral ) PPI and the role of patients, more events and fora for patients and researchers and policy makers to collaborate. More involvement on the ground at a local level throughout rural Ireland Facilitating greater direct interaction with patients and researchers Patients speaking out on their own experiences with their chronic illness Educational guides Recognition of invisible illness as disability. Quality of life issues for patients with chronic illness. Access to Long Term Illness Scheme and other social supports

12. Q8: Are there any topics you would like IPPOSI to avoid? • Alarmist - public negative sound bites • Not that I can think of • PPI, there is much going on in this space. Conserve time and energy here • None. Keep doing the good work. • GDPR - it is frequently used as a smokescreen to prevent the appropriate sharing of data with consent • No - all should be considered and explored. Priorities should be identified and then progressed.

13. Q9: What specific kinds of activities would you like IPPOSI to do in 2019? Please give your top 5 priorities, ranked 1-5, with 1 being the most important. • Answered: 102 Skipped: 1 Raising public awareness on the benefits and risks of patient data sharing Developing patient education content (e.g. Digital Health Literacy) Providing training for professionals in healthcare, academia, industry Developing + Advocating patient-led positions on patient data sharing Bringing a patient-led narrative to eHealth initiatives/committees Influencing relevant health policy, legislation, regulation, guidelines Engaging with the broadcast/journalist media on patient data Organising multi-stakeholder workshops and events

14. Q10: With your consent, how likely are you to agree to your personal health data being collected, stored, shared and used for: • Answered: 102 Skipped: 1