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eHealth Ecosystem - Dr Derick Mitchell - October 2017
This document discusses structured patient engagement in eHealth. It describes IPPOSI, a patient-led organization that advocates for patient involvement in health innovation, research, and policy. IPPOSI priorities include improved patient access to health innovation and meaningful patient participation. The document outlines challenges to patient engagement and emphasizes trust, education, and frameworks to enable ethical use of patient data. It proposes a roadmap for an electronic health record program that incorporates patient consultation at various stages. Overall, the document advocates for informed, engaged, and empowered patient participation in eHealth.
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eHealth Ecosystem - Dr Derick Mitchell - October 2017
- 1. October 25th, 2017 PATIENTS– SCIENCE – INDUSTRY Structured and sustainable patient engagement Derick Mitchell
- 2. Heart of theeHealth Ecosystem? “People perform better when they are informed better” @EpatientDave
- 3. Collaborative sensemaking “We arewitnessing the collapse of expertise and the rise of collaborative sensemaking” David Holzmer
- 4. Evidence-based patient advocacy InGod We Trust…..…Everyone Else Bring Data!
- 5. IPPOSI? Who?IPPOSI A patient-ledorganisation that works with patients, government, industry, & science to put patients at the heart of health innovation
- 6. IPPOSI Priorities +Members 20 Actively advocate for improved + equitable patient access to Health Innovation Promote meaningful patient involvement in Health Research and Policy
- 7. Patient-led activities ineHealth Health Hacks Workshops Consultations Round-tables Working Groups Summer Schools Conferences Connected Health Health Information Patient Data Health Economics Patient Registries Dynamic Consent Data Protection
- 8. Our Resources INFORM ENGAGEEMPOWER
- 9. Incorporating the patientvoice in eHealth • 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 information policy, dialogue • Many patient orgs are not focused on eHealth/policy issues “The perfect is the enemy of the good”
- 10. What we havelearned… • 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
- 11. 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
- 12. What do weneed to enable use (& re-use) of patient data? Good Education Legal Frameworks SOPs Frameworks of Engagement
- 13. IPPOSI & TheEuropean 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
- 14. Roles change asa 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.
- 15. The Power ofPatient Education 7-month programme in Health Innovation Blended Learning – online + workshops 3 x 6-week modules • Clinical Trials • Regulatory Affairs • Health Technology Assessment 3 x Education Partners - UCD, TCD, HPRA 1 elearning website - www.patientsinvolved.ie 21 Students from 9 counties
- 16. TCD summer school- 2017 Human Computer Interaction in eHealth
- 17. What would aframework of patient community engagement for use (& re-use) of patient data look like? EVOLVE INFORM ENGAGE EDUCATE EMPOWER EVALUATE Demonstrate the ‘return’ on the engagement for all players
- 18. EHR Programme Roadmap 18 StartYear2 StartYear 3 Programme Governance National Requirements Business Cases Procurement Office Portal & integration Requirements Acute Requirements Deployment Strategies Community Requirements Prepare to deployCHO Readiness Assessment HG Readiness Assessment Prepare to deploy Portal & Integration Implementation Portal & Integration Procurement Community Procurement Community Implementation Acute Procurement Acute Implementation Privacy and Data Sharing Strategic Business Case Programme Management Communications and Engagement CHG Implementation Decision point involving agreement with party outside HSE, e.g. DoH, DPER Decision point involving agreement with HSE stakeholders such as Hospital Groups or CHO’s Slide courtesy of Fran Thompson, HSE
- 19. EHR Programme Roadmap– including Patient Engagement 19 StartYear 2 StartYear 3 Programme Governance National Requirements Business Cases Procurement Office Portal & integration Requirements Acute Requirements Deployment Strategies Community Requirements Prepare to deployCHO Readiness Assessment HG Readiness Assessment Prepare to deploy Portal & Integration Implementation Portal & Integration Procurement Community Procurement Community Implementation Acute Procurement Acute Implementation Privacy and Data Sharing Strategic Business Case Programme Management Communications and Engagement CHG Implementation Decision point involving agreement with party outside HSE, e.g. DoH, DPER Decision point involving agreement with HSE stakeholders such as Hospital Groups or CHO’s Touch point involving patient engagement / consultation and involvement
- 20.
- 21. Starting points… 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)
- 22. The Patient Narrative Project Reference: PhelanA., 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
- 23. 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
- 24. Themes Emerging From Phase1 My healthcare experiences Healthcare I am confident in My journey through healthcare
- 25. 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.
- 27.
- 28. • Survey LiveSept-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
- 29. 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 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’
- 30. Your Voice Matters– Results workshop Monday, Nov. 13th, 2017 Royal College of Physicians, Kildare St. Dublin 10am – 3pm
- 31. Where we wantto get to… INFORM ENGAGE EMPOWER
- 32.
Editor's Notes
- #3 At the heart of the ecosystem is the empowered patient We would like to create the situation where patients are the drivers of their data, ensuring it is utilised to improve their health. A patient who, with the right information, could start to gain control of their health. Encourage you to keep the patient at the centre of the developing ecosystem
- #5 Last year – experience of patients here I presented the why, who etc. focus on HTA agencies This year?
- #6 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.
- #10 Regulators and funders are doing it!
- #12 (user requ (standards, data dictionary) irements, information needs, absence of jargon, participatory approach) Access issues ( – Informed and Explicit
- #17 5 patient contributors participated alongside PhD students in an educational summer school on Human Computer interaction in eHealth
- #18 A unique framework that enables structured, effective, meaningful, ethical, innovative, and sustainable patient engagement (and demonstrates the ‘return’ on this engagement for all players)
- #21 eHealth ‘to be’ architecture within Knowledge and Information plan
- #22 Context is how do you transform services towards what people want, when they want them.
- #23 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)
- #25 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.
- #26 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
- #27 10,000 Voices in NI - 14,000 patients have now completed this survey
- #29 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.
- #30 identification of enablers and challenges to successful implementation
- #32 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?