Membership Survey on Patient Data' Powered by 103

Membership Survey on Patient Data' Powered by 103

Membership Survey on Patient Data' Powered by 103 Total Responses Date Created: Wednesday, March 13, 2019 Deadline: Sunday, March 31, 2019 Complete Responses: 101 Average time taken: 6 minutes, 50 seconds Powered by Q1: Are you an IPPOSI member? Answered: 101 Powered by Skipped: 0 Wordcloud of Member Organisations represented No more than 3 from any individual organisation Powered by Q3: Which of the following best describes you? Answered: 102 Powered by Skipped: 1 Q3 breakdown: IPPOSI Members Powered by Non-Members 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 Powered by Skipped: 0

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 Powered by 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 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artificial intelligence) Improving Data Quality & Infrastructure (e.g. 'Cleaning' of data, fragmented systems, outdated IT resources, burden on professionals) Addressing Trustworthiness in use of data (e.g. Commercial interest, Who benefits?, Effective regulation, Do no harm)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

Powered by [ Figures represent number of responses ] Integr ated care no Transla tion of clinical resear ch to active treatm ent. Data infrast ructur e, IT archite cture and intrao perabil ity. Contac t Prof Pamel a Hussey at DCU to discuss data diction ary develo pment. Data sharin g is useless if it isnt possibl e to

use it becaus e the system s dont talk to each other. No The lack of an integr ated IT system betwe en hospit als clearly leads to a lack of mobilit y of patient data, constri cts owner ship and limits a patient s ability to make choices about their own treatm ent. At this stage Ireland

is one of the only EU countri es withou t an integr ated IT system and relativ e nation al patient identifi ers, which means that the roll out of new techno logies such as Next Gener ation Seque ncing, Artifici al Intellig ence etc will be very limited . No Patient prefer ences for

eHealt h initiati ves. Appro priate patient group repres entatio n to input into any Nation al eHealt h initiati ves, pilots, proof of concep t, strate gy, frame work develo pment. Osteoa rthritis , often dismiss ed.The attitud e is : its just your age, which is not true in my case To mark

World Ovaria n Cancer Day May 8th Having a confer ence relatin g to transla tional resear ch for rare diseas es. Scienti sts with a transla tional vision and track record in bringin g resear ch from bench to bedsid e. There is much to learn from these kind of people

Patient involv ement in care We would like accura te statisti cs collect ed and shared on the inciden ce of Hospit al Acquir ed Throm bosis includi ng cold face reporti ng and linking differe nt hospit als. Buildin g confide nce within people re health resear ch Yes capacit y to consen t for young

er or incapa citated individ uals Dont know Increas ing aware ness on this issuegood practic e exampl es, benefit s to all etc Promo te the high numbe r of Auto immun e diseas es in ireland 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 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. 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 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. How to improv e patient access to clinical genetic center s ( overh aul criteri a for patient referra l) Easier use of anony mised patient data in resear ch and dissem ination of

finding s. No. More on consist ent messa ging so I suppos e that falls under encour aging collab on guideli nes (menti oned above) . PPI and the role of patient s, more events and fora for patient s and resear chers and policy makers to collabo rate. No More involv

ement on the ground at a local level throug hout rural Ireland Trainin g staff on safe use of the record s to ensure consist ency and compli 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. Data Quality / Infrastructure / Interoperability Data infrastructure, IT architecture and interoperability. Data sharing is useless if it isnt possible to use it because the systems dont 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. Powered by 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 ) Powered by 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 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. Powered by 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 Powered by Q10: With your consent, how likely are you to agree to your personal health data being collected, stored, shared and used for: Answered: 102 Powered by Skipped: 1

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