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Derick Mitchell SPHERE conference Jan 2018
The document discusses the role of patient involvement in health research and innovation, highlighting the significance of patient-driven data and evidence in shaping healthcare policies. It outlines the priorities of IPPOSI, a patient-led organization, and emphasizes the need for collaborative frameworks to embed patient perspectives in health research practices. Current challenges and a vision for the future of patient involvement in research in Ireland are also explored, including the call for education, support, and a structured approach to integrate patient voices effectively.
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Derick Mitchell SPHERE conference Jan 2018
- 1. January 11th, 2018 PATIENTS– SCIENCE – INDUSTRY Structured & Sustainable Patient Involvement
- 2. SPHERE Conference 201811/1/2018www.ipposi.ie My talk • IPPOSI • How patient voices are changing health research + innovation? • The power of patient-driven data & evidence • Harnessing Patient Experience
- 3. SPHERE Conference 201811/1/2018www.ipposi.ie Patients as Partners?
- 4. SPHERE Conference 201811/1/2018www.ipposi.ie Collaborative sensemaking “We are witnessing the collapse of expertise and the rise of collaborative sensemaking” David Holzmer
- 5. SPHERE Conference 201811/1/2018www.ipposi.ie Evidence-based patient advocacy In God We Trust…..…Everyone Else Bring Data!
- 6. SPHERE Conference 201811/1/2018www.ipposi.ie IPPOSI? Who?IPPOSI A patient-led organisation that works with patients, government, industry, & science to put patients at the heart of health innovation
- 7. SPHERE Conference 201811/1/2018www.ipposi.ie IPPOSI Priorities + Members 20 Actively advocate for improved + equitable patient access to Health Innovation Promote meaningful patient involvement in Health Research and Policy
- 8. SPHERE Conference 201811/1/2018www.ipposi.ie PATIENT ORGANISATIONS SCIENCE INDUSTRY
- 9. SPHERE Conference 201811/1/2018www.ipposi.ie Public Private Partnership IPPOSI Board: Grant from Department of Health (via Health Research Board) Industry membership fee Project Funding 8 Patient Organisations 6 Scientific Members 6 Industry Members 2016/2017 Board FUNDINGLEADERSHIP
- 10. SPHERE Conference 201811/1/2018www.ipposi.ie Patient-led activities Health Hacks Workshops Consultations Round-tables Working Groups Submissions Conferences Clinical Research Health Information Patient Data Health Economics Patient Registries Access to Medicines Data Protection Patient Experience
- 11. SPHERE Conference 201811/1/2018www.ipposi.ie What do patient advocates want re: health research? That the patient voice is listened to • To be involved as early as possible in research design, priority setting, policy • To improve the quality of research - less wastage • To ensure better use/reuse of research outputs and tools • To generate impact and burden data to support the results of clinical trials • To use online / ehealth / mobile health apps to generate patient-based evidence
- 12. SPHERE Conference 201811/1/2018www.ipposi.ie What do we need to embed PPI in research + practice? •Includes people, funding, networks, supports •Education + Training for BOTH researchers and patients / public • Evidence to inform practice • High quality reporting to grow evidence base • Understanding how PPI works in different contexts Context Evidence + Reporting Resources + Infrastr. Education Demonstrate the impact & how it makes a difference
- 13. SPHERE Conference 201811/1/2018www.ipposi.ie 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, research, dialogue • Many patient orgs are not focused on macro policy issues “The perfect is the enemy of the good”
- 14. SPHERE Conference 201811/1/2018www.ipposi.ie Wow!.....passionate and knowledgeable about PPI in research Early Adopters Constituency 2 Constituency 3 “Hmm . . . show me the evidence that all this works and is helpful” “Well …. PPI is a good idea but where on earth do I start?”
- 15. SPHERE Conference 201811/1/2018www.ipposi.ie Current Challenges • Research not (yet) embedded in Irish healthcare system? • Support & Training for Patients for specific roles in research? • Equality, Inclusiveness & Sustainability of current efforts? • How to shift the power balance between researchers and patients? • Qualitative research tends to be at bottom of research hierarchy? • Evidence of the value and impact of PPI? • An over-arching vision for PPI in Research?
- 16. SPHERE Conference 201811/1/2018www.ipposi.ie 2025 – a vision for PPI in Research in Ireland? To begin this process: • Develop a common understanding • Share learning and ‘know how’ • Support organisations to develop robust PPI infrastructure • Set standards and policies • Embed the principles and inform the emerging practice • Assess the impact of PPI in research
- 17. 2018 - Whereare we? Research Leadership 5 PPI Ignite awards (€1.75m) University of Limerick – Prof Anne MacFarlane University College Dublin - Prof Thilo Kroll NUI Galway - Prof Sean Dinneen Dublin City University - Dr Veronica Lambert Trinity College Dublin - Prof Mary McCarron Royal College of Surgeons, Ireland University College Cork Irish College of General Practitioners Many other Irish researchers and research orgs Health Agency Leadership Dept. of Health Muiris O’Connor, Head of Research & Analytics, Assistant National Director HSE Ana Terres – HSE Head of Research and Development, Assistant National Director HRB Anne Cody – Head of Pre-Award, Public Reviewers of proposals
- 18. 2018- Where arewe? Patient / Patient Org. Leadership • IPPOSI - Derick Mitchell, CEO • MRCG - Avril Kennan, CEO • Condition-specific patient orgs: • Fighting Blindness • Irish Cancer Society • MS Ireland – Ava Battles, CEO • CF Ireland – Philip Watt, CEO • 9 Irish EUPATI Fellows (+4) • Irish Health Research Forum Links to International Leadership • EUPATI • European Patients Forum • EURORDIS • Several UK groups (NIHR, INVOLVE, James Lind, COMET, CRUK, etc.) • PCORI (USA) • CIHR (Canada) • Cochrane • EU Projects - H2020, IMI
- 19. 2018- Where arewe? Public / Patient / Media Interest
- 20. SPHERE Conference 201811/1/2018www.ipposi.ie Frameworks of Involvement 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) 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)
- 21. SPHERE Conference 201811/1/2018www.ipposi.ie Metrics of Value of Involvement • Anecdotal ----Qualitative----Quantitative • Time / Cost savings • Improved relationships • Outcomes of relevance to patients
- 22. SPHERE Conference 201811/1/2018www.ipposi.ie Assessing the Financial Value of PPI From: A Quantitative Approach from CTTI’s Patient Groups and Clinical Trials Project. Levitan B et al., Drug Inf J : Therapeutic Innovation & Regulatory Science. Published: July 17, 2017. https://doi.org/10.1177/2168479017716715
- 23. SPHERE Conference 201811/1/2018www.ipposi.ie Tendering & Procurement impact DOI: 10.1111/hae.12720
- 24. SPHERE Conference 201811/1/2018www.ipposi.ie The Impact of Patient Education 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.
- 25. SPHERE Conference 201811/1/2018www.ipposi.ie Pilot Irish Patient Education Programme 7 months – ends on March 21st, 2018 3 x 6-week Modules • Understanding Clinical Trials • Regulatory, Medicines Safety, PV • HTA Principles + Practices Irish Education Partners 2 Universities, 1 Regulator, 1 HTA Agency, 1 LMS website: www.patientsinvolved.ie 21 Students – Irish patients, carers, advocates
- 26. SPHERE Conference 201811/1/2018www.ipposi.ie 20142018 = Eighteen Interest from: Brazil, Cyprus, Finland, Hungary, Israel, Russia, Serbia, Sweden and Turkey EUPATI Countries Legal Entity
- 27. SPHERE Conference 201811/1/2018www.ipposi.ie EUPATI Countries 2018 Regional Groups
- 28. SPHERE Conference 201811/1/2018www.ipposi.ie The power of patient-driven evidence + data
- 29. SPHERE Conference 201811/1/2018www.ipposi.ie Generating patient-based evidence • Health stakeholders take decisions based on evidence, not on (our) anecdotes • Patient organisations are best-placed to generate patient- relevant data • Cost-effectiveness is key. Prove that the informed patient is cost-effective…..!
- 30. SPHERE Conference 201811/1/2018www.ipposi.ie Health Information / Patient Data
- 31. SPHERE Conference 201811/1/2018www.ipposi.ie What we have learned… • Trustworthiness 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
- 32. Development of Electronic Health Records (10 years) NationalEducation / 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
- 34. SPHERE Conference 201811/1/2018www.ipposi.ie Access To Information • Healthlink - National Message Broker • Healthmail - National Secure Clinical Email Solution • Integration with building blocks for national Electronic Health Record • Innovation - development of MyHealthPortal
- 35. SPHERE Conference 201811/1/2018www.ipposi.ie Patient Registries • Evaluating new treatments in real-world settings (Pharmaco-vigilance) • Rare Disease Reference Centres of Excellence Slide courtesy of Abigeal Jackson, CF Registry of Ireland
- 36. Umotif, PatientslikeMe, Carenity Graphicallydisplay charts, timelines and various representations of different measures
- 37. SPHERE Conference 201811/1/2018www.ipposi.ie Harnessing Patient Experience
- 38. SPHERE Conference 201811/1/2018www.ipposi.ie Patient Experience Survey - Hospitals
- 39. SPHERE Conference 201811/1/2018www.ipposi.ie 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. Phases 1 + 2 + 3: Person-centered, co-ordinated care
- 40. Person centered co-ordinatedcare 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
- 41. SPHERE Conference 201811/1/2018www.ipposi.ie Themes Emerging From Phase 1 My healthcare experiences Healthcare I am confident in My journey through healthcare
- 42. SPHERE Conference 201811/1/2018www.ipposi.ie My Journey through Healthcare • My care includes issues that my health influences, such as finances, housing, employment, ability to travel and access to transport. • I have services delivered by the most suitable healthcare staff in the correct setting and when I need them. • I can have one person who will oversee and follow up on all my care.
- 43. SPHERE Conference 201811/1/2018www.ipposi.ie
- 44. SPHERE Conference 201811/1/2018www.ipposi.ie Phase 2 • http://www.hse.ie/yourvoicematters
- 45. SPHERE Conference 201811/1/2018www.ipposi.ie • Survey remains live • Proof-of-Concept • Producing data on patients’ experience of care when they use more than one health service • Target: • 1000 stories nationally, particularly in relation to older people and people with chronic conditions • Channel through Integrated Care Programmes HSE
- 46. By end of2017… 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 POC 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’
- 47. SPHERE Conference 201811/1/2018www.ipposi.ie International Conference on Integrated Care May 2017, UCD https://patientsincluded.org • 50 free admissions for IPPOSI patient members • 20 took up co-chair positions
- 48. SPHERE Conference 201811/1/2018www.ipposi.ie PPI is now Global • EUPATI - EU • PCORI - USA • PFMD • INVOLVE UK + Australia • ICHOM • ISPOR • EU Projects • H2020, IMI • Joint Programmes • IMI – PARADIGM (2018-2021)
- 49. SPHERE Conference 201811/1/2018www.ipposi.ie 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
- 50. SPHERE Conference 201811/1/2018www.ipposi.ie Focus: the three decision-making points Research priority setting Early dialogues with regulators and HTA bodies Design of clinical trials
- 51. SPHERE Conference 201811/1/2018www.ipposi.ie Where IPPOSI wants to get to… INFORM ENGAGE EMPOWER
- 52.
Editor's Notes
- #4 POWER SHIFT
- #6 WE ARE INTERESTED IN PATIENT LEADERSHIP
- #7 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.
- #12 building real world effectiveness data – for example - following a decision of conditional reimbursement, incorporating patient relevant outcomes.
- #13 Everyone to understand the potential and know how to make the most of it
- #14 Regulators and funders are doing it!
- #15 The visible top represented the early adopters already passionate and knowledgeable about PPI in research. But under the water lurks a larger two part constituency. The “well PPI is a good idea but how on earth do you do it?” group, and the “Hmm . . . show me the evidence that all this works and is helpful” group. A warning was then issued that the network must avoid preaching to the converted and ensure it reaches out to the hearts and minds of those “below” the water line. “The Irish paradox.” Louise Locock, professor of health services research at the University of Aberdeen, pointed out that while Scotland is widely seen as a leader in patient centred care, it only funds one (part time) person to embed PPI in research. Victoria Thomas, head of public involvement at NICE, pointed to another conundrum: the persistent tendency to put qualitative research—which is relevant and important in relation to a lot of the work around PPI—down the bottom of the research hierarchy. One issue where all were in agreement was that there is a need to shift the power balance between researchers and patients, for it still remains firmly skewed towards the former.
- #16 “the Scottish paradox.” Louise Locock, professor of health services research at the University of Aberdeen, pointed out that while Scotland is widely seen as a leader in patient centred care, it only funds one (part time) person to embed PPI in research. Victoria Thomas, head of public involvement at NICE, pointed to another conundrum: the persistent tendency to put qualitative research—which is relevant and important in relation to a lot of the work around PPI—down the bottom of the research hierarchy. One issue where all were in agreement was that there is a need to shift the power balance between researchers and patients, for it still remains firmly skewed towards the former.
- #17 A vision, remit, and outputs of a new enterprise like PPI in Ireland has yet to be devised.
- #21 Context is how do you transform services towards what people want, when they want them.
- #22 Convincing the health economists
- #28 Cultivating synergies: EUPATI ENP’s have continued to work together over the last year to find ways in which they can achieve more together A Tri-National Exchange Group with the Swiss, German and Austrian platforms have taken place to explore synergies and joint activities/documents. The Norway platform attended a meeting with the future EUPATI Sweden discuss future strategies as well as a potential future Nordic/Scandinavian collaboration What are your biggest challenges and how can you work with neighbouring ENP’s to over come them? What synergies and opportunities can you explore with your neighbouring ENP’s to help you to continue to make progress in the future? What can you learn from similar ENP’s?
- #31 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,
- #33 (user requ (standards, data dictionary) irements, information needs, absence of jargon, participatory approach) Access issues ( – Informed and Explicit
- #35 Access to Information was primarily established to address the fragmentation that exists within the health systems in use in Ireland and to bring the silos of information together. It is also tasked with ensuring new systems and solutions being introduced will integrate with other systems and that no new silos of information are created. The function has an enterprise wide view of eHealth Solutions so information can flow easily through the system and can be reused and redirected where appropriate.
- #37 uMotif uses the capabilities of smartphones– such as accelerometers– to perform simple diagnostics integrated with results from quizzes, timed games, etc., to measure symptoms
- #39 Listening exercise – first time we had patients identifying their needs, and communicating back to HCPs Response rate of 51% shows the willingness to have patient voices heard Majority of patients have confidence in the HCPs that treat them 83% of patients were treated with dignity and respect 96% of patents felt that their hospital ward was clean Journey into the hospital is not as good, hard to recover Issues with discharge – 40% had a bad experience – a lot based on communications and information – can be fixed
- #40 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)
- #42 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.
- #43 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
- #44 10,000 Voices in NI - 14,000 patients have now completed this survey
- #46 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.
- #47 identification of enablers and challenges to successful implementation
- #48 #patientsincluded conference charter obtained
- #49 International Consortium for Health Outcomes
- #50 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!
- #52 When someone tells you that patients cannot understand or just do not want to know, just look at the data….. Our relationship is fragile, dynamic, uncomfortable, ambitious, and goal-oriented Healthcare Environment is changing….are you?