Personalised Medicine Congress (EAPM) - Dr Derick Mitchell - November 2017
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IPPOSI Chief Executive presented at the EAPM 2017 Conference in Belfast in the ‘Personalised Medicine and Public Health: Two Sides of the Same Coin?’ session.
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Personalised Medicine Congress (EAPM) - Dr Derick Mitchell - November 2017
- 1. November 29th, 2017 PATIENTS – SCIENCE – INDUSTRY 1st European Alliance for Personalised Medicine Congress Derick Mitchell
- 2. European Alliance for Personalised Medicine Congress29/11/2017 www.ipposi.ie Heart of the PM Ecosystem? “Just because a system has patient data at its core does not mean it is patient-centric” Jane Grimson
- 3. European Alliance for Personalised Medicine Congress29/11/2017 www.ipposi.ie Linking Personalised Medicine & Public Health • Making better use of patient data (health, genomic, experience) • Engaging citizens on discourse on precision health • Improving Genetic Health Literacy • Adapting HTA frameworks, Real-World Evidence, • Tackling information governance, consent, Electronic Health Records HOW CAN PM CHANGE PUBLIC HEALTH PRACTICE?
- 4. European Alliance for Personalised Medicine Congress29/11/2017 www.ipposi.ie Collaborative sensemaking “We are witnessing the collapse of expertise and the rise of collaborative sensemaking” David Holzmer
- 5. European Alliance for Personalised Medicine Congress29/11/2017 www.ipposi.ie Evidence-based patient advocacy In God We Trust…..…Everyone Else Bring Data!
- 6. European Alliance for Personalised Medicine Congress29/11/2017 www.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. European Alliance for Personalised Medicine Congress29/11/2017 www.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. European Alliance for Personalised Medicine Congress29/11/2017 www.ipposi.ie Patient-led activities Health Hacks Workshops Consultations Round-tables Working Groups Summer Schools Conferences Clinical Research Health Information Patient Data Health Economics Patient Registries Dynamic Consent Data Protection
- 9. European Alliance for Personalised Medicine Congress29/11/2017 www.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, dialogue • Many patient orgs are not focused on policy issues “The perfect is the enemy of the good”
- 10. European Alliance for Personalised Medicine Congress29/11/2017 www.ipposi.ie What do we need to enable use (& re-use) of patient data? Good Education Legal Frameworks SOPs Frameworks of Engagement
- 11. European Alliance for Personalised Medicine Congress29/11/2017 www.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
- 12. European Alliance for Personalised Medicine Congress29/11/2017 www.ipposi.ie 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
- 13. European Alliance for Personalised Medicine Congress29/11/2017 www.ipposi.ie Roles change as a result of EUPATI course 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
- 14. European Alliance for Personalised Medicine Congress29/11/2017 www.ipposi.ie The Power of Patient Education 7-month programme in Health Innovation Blended Learning – online + workshops 3 x 6-week modules • Clinical Trials • Regulatory Affairs • Health Technology Assessment 4 x Education Partners - UCD, TCD, HPRA, HIQA 1 elearning website - www.patientsinvolved.ie 21 Students from 9 counties
- 15. European Alliance for Personalised Medicine Congress29/11/2017 www.ipposi.ie Frameworks of Engagement 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. European Alliance for Personalised Medicine Congress29/11/2017 www.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
- 17. 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
- 18. European Alliance for Personalised Medicine Congress29/11/2017 www.ipposi.ie Themes Emerging From Phase 1 My healthcare experiences Healthcare I am confident in My journey through healthcare
- 19. European Alliance for Personalised Medicine Congress29/11/2017 www.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.
- 20. European Alliance for Personalised Medicine Congress29/11/2017 www.ipposi.ie
- 21. European Alliance for Personalised Medicine Congress29/11/2017 www.ipposi.ie Phase 2 • http://www.hse.ie/yourvoicematters
- 22. European Alliance for Personalised Medicine Congress29/11/2017 www.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
- 23. 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’
- 24. European Alliance for Personalised Medicine Congress29/11/2017 www.ipposi.ie Patient Narratives in PM? Right treatment, Right time, Right patient at the right location, by the right provider, at the right cost Minimally Disruptive Treatments • Impact on clinical trial design • Impact on clinical guidelines • Impact on clinical practice • Impact on service delivery, coordination V-T Tran et al. (2015) Taxonomy of the burden of treatment: a multi-country web-based qualitative study of patients with chronic conditions BMC Medicine 13:115
- 25. European Alliance for Personalised Medicine Congress29/11/2017 www.ipposi.ie Where we want to get to… INFORM ENGAGE EMPOWER
Editor's Notes
- 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. I encourage you to keep the patient at the centre of this developing ecosystem
- Hopefully I can present some ideas on how these two areas can come closer together.. Focus on patient need, inform multidiciplinary care
- Last year – experience of patients here I presented the why, who etc. focus on HTA agencies This year?
- 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!
- Everyone to understand the potential and know how to make the most of it
- Context is how do you transform services towards what people want, when they want them.
- 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
- CIHR - Stephen Robbins Usual quote re: Permed: Right treatment, right time, right patient Add: at the right location, by the right provider, at the right cost. Greater focus on access & equity Minimizing disruption to the patient Negotiating goals Is stratified medicine really targeting patients unmet needs? Is the promise a fulfillable one? If you happen to fit the bill (eligible for a trial), then great, but what about the others still in the dark? Will PM affect the standard of care if its only for a small cohort? If the trials are more efficient, we will know much quicker what the benefit will be.. Need confidence that the ‘off you go, flog it’ I’ll let you into a secret – patients are not interested in drugs that don’t work – other stakeholders are interested in keeping the status quo – if they are not working, then you are simply wasting time…so concentrate on the things that do work Study recently estimated over 50 things which are on the NHS, which have been categorically shown not to work.. Regulators would prefer that biology follows the law, rather than the other way round… From the patient view, I see the possibility of a life-changing intervention, being snatched away from me.. Ivacaftor is a clear black/white decision For others, the benefits are less clear. Its going to be incredibly difficult to organise development programmes to demonstrate the benefit and the value for money for making these available for routine prescription When you are developing a trial, if you plan your trial based on my life, the things that really affect my life, then I am far more likely to be involved and support.
- 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?