Health information Seminar - Dr Derick Mitchell - Oct 2017
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Patient involvement in health information
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Health information Seminar - Dr Derick Mitchell - Oct 2017
- 1. October 4th, 2017 PATIENTS – SCIENCE – INDUSTRY Influencing Policy, Activating Patients, Harnessing Industry Derick Mitchell
- 2. My talk • What is IPPOSI? • How are patient voices changing health innovation? • IPPOSI Survey (QUIZ)
- 3. The patient advocate perspective Ingrid Brindle Hawton-Thornley Medical Centre PPG IPPOSI-HISI Patient-led Workshop Nov 2016
- 4. IPPOSI? Who?IPPOSI A patient-led organisation that works with patients, government, industry, & science to put patients at the heart of health innovation
- 5. IPPOSI Priorities 20 Actively advocate for improved + equitable patient access to Health Innovation Promote meaningful patient involvement in Health Research and Policy
- 6. Our Resources INFORM ENGAGE EMPOWER
- 7. Incorporating the patient voice • Hierarchical Rhetoric • ‘Walking the walk’ at the highest possible level Challenges: • Decision-makers never want to change their processes • Patients are not trained in health policy, dialogue • Many patient orgs are not focused on policy/R&D issues “The perfect is the enemy of the good”
- 8. IPPOSI & The European Patients Academy • EUPATI produces Expert Patients on Medicines Research & Development • Provides Training & Education • Disseminates through national platforms The project received support from the Innovative Medicines Initiative Joint Undertaking under grant agreement n° 115334, resources of which are composed of financial contribution from the European Union's Seventh Framework Programme (FP7/2007-2013) and EFPIA companies. www.eupati.eu
- 9. 18+ EUPATI National Platforms • Bring all stakeholders together in countries • Address educational needs in R&D • Disseminate EUPATI’s training material National platforms now established in: AT, BE, FR, DE, IE, IT, LU, MT, PL, ES, CH, UK, DK, SK, PT, NO, RO, GR Additional platform initiatives ongoing in Serbia, Brazil, Japan
- 10. Roles change as a result of EUPATI course - creating patient leaders Role Before EUPATI After Member of patient organisation, not actively involved 17% 2% Active role in a patient organisation 62% 71% Leadership role in a patient organisation 62% 71% Employee of a patient organisation 25% 23% Volunteer role in a patient organisation 60% 67% Presenting at conferences, workshops etc. 63% 83% Advising a pharmaceutical company 13% 44% Advising a regulatory agency 21% 42% Advising a reimbursement agency 4% 8% EUPATI Fellows are increasingly taking leadership roles and are engaging with pharma, regulators and HTA bodies. Role changes also imply identity shifts.
- 11. Practical “Roadmap” on patient involvement in medicines R&D Research design and Planning Design of Protocol Informed Consent Study reporting Post-study communication Patient Info Leaflet Trial steering committee Investigators Meeting Level of expertise in the disease area required: mediumhigh Data Monitoring CommitteePractical considerations Health Technology Assessment Protocol Synopsis Research priorities Setting research priorities: Information to trial participants Research conduct and operations Regulatory affairs Dissemination, communication, post-approval Source: Geissler, Ryll, Leto, Uhlenhopp (2017) Therapeutic Innovation & Regulatory Science. (doi: 10.1177/2168479017706405) Fundraising for research Ethics Review
- 12. First Irish Patient Education Programme 7-month-pilot programme in Health Innovation 3 Modules – Clinical Trials, Regulatory Affairs, HTA Practices 3 Education Partners - UCD, TCD, HPRA 1 elearning website: www.patientsinvolved.ie 21 Students from 9 counties - 36 applications
- 13. Building a new Irish health research environment Patient & Public Involvement (PPI) 2014 - PPI paper - Irish Health Research Forum 2016/17 - PPI reviewers - HRB 2017 - PPI Ignite Funding – HRB + IRC 2017 – Scientific Advice – Patient Involvement – HPRA
- 14. Building a new Irish healthcare environment 2008 - National Strategy for Service User Involvement in Health and Social Services (DoHC & HSE) --------------------------------------------------------------------------- 2016 – Values in Action, QID Cultures of Person-centeredness (HSE) 2016 – Mental Health Local Recovery Groups (HSE) 2016 – Privacy Impact Assessment for Individual Health Identifier (eHealth Ireland) 2017 - National Patient Experience Survey - Hospitals (HIQA, HSE, DoH) 2017 - National Clinical Effectiveness Committee – PPI Values (DoH, NCEC) 2017 –Personas for Electronic Health Records (eHealth Ireland) 2017/18 - Patient Narrative Project on Person-centered care (CSPD-HSE, IPPOSI)
- 16. Development of Electronic Health Records (10 years) National Education / Training on EHRs For clinicians, nurses and Patients By clinicians, nurses and Patients Capacity Building / Empowerment of patients Link to self-management programmes OPPORTUNITIES FOR PATIENT INVOLVEMENT TO ADDRESS THE FOLLOWING CHALLENGES EHR Design + Roll-out Patient Portal Other building blocks Decision-making boards Promoting Partnerships Communication Openness & Transparency Advocating for essential building blocks Real-Time information Informed Consent Bi-directional flow of information Tracking patient outcomes Public Trust + Confidence Who, When, Why? Consent – How? Special Considerations for individual groups Data Linkage & Sharing Trust Patient Experience Education and Training Collaboration Communication Timing Sharing Community Access Consent Data Quality
- 17. What we have learned… • Trust is vital - patients must believe that their data is secure and only used for the purposes they consented to • Equally, create the situation where patients are the drivers of their data, ensuring it is utilised to improve their health
- 18. What do we need to enable use (& re-use) of patient data? • Good Education • Legal Frameworks • SOPs • Framework of Engagement Everyone to understand the potential and know how to make the most of it
- 19. What would a framework of engagement for use (& re-use) of patient data look like? Engages Empowers Educates Evaluates Evolves A unique framework that enables structured, effective, meaningful, ethical, innovative, and sustainable patient engagement (and demonstrates the ‘return’ on this engagement for all players)
- 20. The Patient Narrative Project Reference: Phelan A., Rohde D., Casey M., Fealy G., Felle P., Lloyd H. & O’Kelly G. (2017) Patient Narrative Project for Person-Centred Co-ordinated Care. UCD, IPPOSI & HSE, Dublin. Phase 1: Person-centered, co-ordinated care
- 21. Person centered co-ordinated care Phase 1 What people in Ireland want to experience during their care when they require a number of health services at one time or over time Phase 2 + 3 A framework that will hear peoples’ experiences of using more than one health service at a time 11 Focus Groups 2 Online Surveys 4 Regional Workshops Output: Statements (19) + Definition (1) Online Survey + System Partnerships
- 22. Themes Emerging From Phase 1 My healthcare experiences Healthcare I am confident in My journey through healthcare
- 23. My healthcare experiences • Staff communicate with me in a way that I understand. • I have up-to-date information on my health condition(s), treatments, and available support services. • Staff help me to understand the choices and services available to me now and for my future care. • Healthcare staff listen to me so that they understand my world and what is important to me. • I am treated with empathy, respect and dignity in all dealings with healthcare staff. • In partnership with healthcare staff, I make choices based on what I prefer and my goals. • If I choose, my information can be shared securely with relevant healthcare staff. • I do not have to repeat myself each time I meet new healthcare staff involved in my care. • I can contact the relevant healthcare staff to ask questions that are important to me and I get timely responses to my questions. • Decisions about my care include me as much as I want and involve my carers if I choose.
- 26. • Survey Live Sept-Oct. 2017 • Proof-of-Concept • Producing data on patients’ experience of care when they use more than one health service during this period • Target: • 1000 stories nationally, particularly in relation to older people people with chronic conditions • Channel through Integrated Care Programmes HSE
- 27. By end of 2017… By end of 2018… A ‘tried and tested’ framework • To hear a high volume of patients’ experiences through the online survey • To use data to influence service design, delivery and improvement of integrated care • A qualitative and quantitative evaluation of the proof of concept within the context of the HSE; Integration into ‘business as usual’ • Framework (incl. resource implications) to be integrated into a ‘business as usual’ model • Quality and Patient Safety Structures at CHO level will be essential • QID publication: ‘Quality and Safety Committees; Guidance and resources’
- 28. Wed. Oct. 25th, 2017 • eHealth Ecosystem Event • Radisson Blu, Golden Lane, D2 • 1pm-5pm • Highlights • Projects in Ireland that empower patients to manage their own health • Ways that patients should be involved in the innovation process
- 29. The patient advocate perspective? “You’re looking at the macro picture and you have to, but somewhere out there are all these microchips and we’re making up the macro picture.” “Are we just the collateral damage while you all get some years to sort out this business? If the Troika wanted it, you would be doing it tomorrow.” Paul Carey Move4Parkinson’s IPPOSI Round-table with Dept. of Health May 2015
Editor's Notes
- A patient-led platform that provides a structured way of facilitating interaction between patients, government, industry, science and academia to put patients at the heart of policy and medicines development. In pursuit of this we hold workshops, discussion groups, training days and conferences on policy, legislation and regulation around the development of new medicines, products, devices and diagnostics for unmet medical needs.
- Regulators and funders are doing it!
- The different levels in which Patient Organisations and patient representatives can get involved in the clinical trial process These are examples of points in time when patient insights and engagement would be sought by multiple stakeholders This is to demonstrate patient involvement is reality and is in practice, not some funky new idea that may be done in the future!
- Health services in Ireland are including patient voices in decision making to a greater extent now than ever before. The HSE’s National Strategy for Service User Involvement 2008-2013, the National Patients Forum, the National Patient Experience Survey and the IPPOSI-led Patient Narrative project are examples. Furthermore, the Department of Health is working with IPPOSI and other relevant patient-led organisations in areas such as rare diseases, dementia and others. Training required to get the expertise required to contribute to research & development projects
- Context is how do you transform services towards what people want, when they want them.
- Bearing this context in mind, IPPOSI will continue to represent patient interests in this key emerging area of healthcare through our meetings, consultations and events. trust is vital patients must believe that their data is secure And only used for the purposes they consented to,
- (user requ (standards, data dictionary) irements, information needs, absence of jargon, participatory approach) Access issues ( – Informed and Explicit
- providing better care, creating positive flow and a virtuous circle
- The Clinical Strategy & Programmes Division of the HSE initiated the Patient Narrative Project to partner with users of healthcare services in the design and delivery of these services. The Patient Narrative Project is a three phase project to progress to partnership working listened to the experiences of people who have had to use multiple health services over time or at one time and through the words of the service users and caregivers developed a set of statements that clearly articulate what users of the Irish health service expect from services and staff. In addition a definition of person-centred co-ordinated care that is written not just for the experts, but for patients, people, families and carers The goal is that the descriptors + definition of what good care and support that is centred around the needs and preferences of the service user/patient looks and feels like for people will be adopted nationally. They will be used to guide policy, strategy and design, and act as a guide to what teams at local levels should be aiming to achieve practically, in their efforts to integrate services around patient, family and carer needs. There are three themes of descriptors: ‘Care for me’ focused on the direct relational experience with healthcare professionals. ‘Care I am confident in’ refers to the actual experience of care in terms of skills, quality, accountability and continuity of care. ‘Care in my journey through healthcare’ represents care that is holistic, accessible at a time needed and takes account of the world of the person and their carer beyond what was traditionally considered health care, but where health has an impact (e.g. education, working life) The Clinical Strategy & Programmes Division of the HSE initiated the Patient Narrative Project to partner with users of healthcare services in the design and delivery of these services. The Patient Narrative Project is a three phase project to progress to partnership working IPPOSI, the Irish Platform for Patient Organisations, Science and Industry, led the first phase of the project. A UCD research team led by Dr Amanda Phelan carried out the research study which listened to the experiences of people who have had to use multiple health services over time or at one time and through the words of the service users and caregivers developed a set of statements that clearly articulate what users of the Irish health service expect from services and staff. In addition a definition of person-centred co-ordinated care that is written not just for the experts, but for patients, people, families and carers The goal is that the descriptors + definition of what good care and support that is centred around the needs and preferences of the service user/patient looks and feels like for people will be adopted nationally. They will be used to guide policy, strategy and design, and act as a guide to what teams at local levels should be aiming to achieve practically, in their efforts to integrate services around patient, family and carer needs. There are three themes of descriptors: ‘My care experiences’ focused on the direct relational experience with healthcare professionals. ‘Care I am confident in’ refers to the actual experience of care in terms of skills, quality, accountability and continuity of care. ‘Care in my journey through healthcare’ represents care that is holistic, accessible at a time needed and takes account of the world of the person and their carer beyond what was traditionally considered health care, but where health has an impact (e.g. education, working life) The experiences of patients, carers, and their organisations were translated into a definition of person-centred co-ordinated care that is written not just for the experts, but for patients, people, families and carers. 19 The goal is that the descriptors + definition of what good integrated care and support looks and feels like for people will be adopted nationally. They will be used to guide policy, strategy and design, and act as a guide to what teams at local levels should be aiming to achieve practically, in their efforts to integrate services around patient, family and carer needs. ‘Care for me’ ‘focused on the direct relational experience with healthcare professionals. ‘Care I can reply on’ ‘refers to the actual experience of care in terms of skills, quality, accountability and continuity of care. ‘Care in my journey through healthcare’ ‘represents care that is holistic, accessible at a time needed and takes account of the world of the person and their carer beyond what was traditionally considered health care, but where health has an impact (e.g. education, working life)
- My healthcare experiences: Direct relational experience with healthcare profs Healthcare I am confident in: Actual experience of care in terms of skills, quality, accountability and continuity of care My journey through healthcare: Three aspects: holistic care, coordination of care within and across services, and access to services when needed.
- The statements and definition indicate that Irish health service users want to be empowered in a seamless journey through the health services, they want to take an active informed role in their care and to be treated as people not health conditions. In addition they expect staff to live the values of the HSE; care, compassion, trust and learning within the workplace and their interactions
- 10,000 Voices in NI - 14,000 patients have now completed this survey
- 40 per county and 20 OP and 20 CC with the additional stories from the populations covered in Social Inclusion. In addition to the collection of data the project will review the most effective and efficient means of stakeholder engagement in order that this can inform the project and business plan for longer term.
- identification of enablers and challenges to successful implementation