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.
Digital Health can be a critical enabler of best-practice health systems and optimal healthcare delivery.
The availability of high quality, accurate and timely health information is fundamental to enhanced patient—clinician relationships, and to improved health outcomes experienced by patients.
However Digital Health is not just about IT alone but about identifying new ways of solving healthcare problems, creating better experiences for patients and efficiencies for healthcare organisations.
Transformational leadership is also necessary to ensure change is sustainable, measurable and creates positive benefits for patients, for those working to deliver healthcare, and for health systems as a whole.
– both information + people
– HCPs will not be interested in the same things as patients
Challenge hospital DPOs to share data
E.g in research. Also, what problems is AI being used to address?
The perceived wisdom, just a few years ago, was that patient engagement was fraught with risk. It could, they argued, become too costly and bureaucratic without offering certain benefits in return.
Now, instead of contemplating the risk of doing patient engagement, growing numbers of decision-makers in medicines development are speaking of the risks of not doing patient engagement.
Behavioral science, patient engagement capacity, and real-world evidence support the evolution towards a new model that integrates patient engagement at all levels.
Regulators are building expectations of patient input and how to generate it, so much so that we are approaching a tipping point where co-creation with patients is on the verge of becoming the default option throughout the system.
Momentum is behind the patient engagement community and we are now getting into the nuts and bolts of making PE work. Whether it’s the WECAN initiative on reasonable legal agreements between patient advocates and drug companies; forthcoming initiatives to determine the Fair Market Value of patient input; the EU-backed PARADIGM partnership; or the patient-centric focus of The Economist Intelligence Unit’s new report on the future of drug development, it is clear that PE is becoming internalised by the medicines development system.
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
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
Launched February 2012 as a public private partnership, 33 consortium members,Funded by Innovative Medicines Initiative Has developed and disseminatedobjective, credible, correct and up-to-date public knowledge about medicines R&D
Is building competencies & expert capacity among patients and the public
A driver of patient engagement in R&D Continues as a permanent educational program led by the EPF in an independent PPP
Both starting in Jan 2020
1 MILLION EURO HORIZON 2020 PROJECT (2020-2022)
Patient-Centered Digital Health
Patient-Centered Digital Health
Derick Mitchell, PhD
A patient-led organisation
that works with patients,
& science to put patients at
the heart of health innovation
Actively advocate for improved + equitable
patient access to Health Innovation
Promote meaningful patient involvement in
Health Research and Policy
Public Private Partnership
8 Patient Organisations
6 Scientific Members
6 Industry Members
50:50 Public : Private
• Grant from Department of Health
• EU- & National-level grants
• Industry membership fee
• Industry member sponsorships
CONNECTIVITY IN THE
TO BUILD THEIR OWN
TO LEARN FROM THEIR
OWN DATA AND FOR THE
HEALTH SYSTEM TO LEARN
TO HELP ASK THE RIGHT
Why educate patients in
• Trustworthiness is vital….
• Patient involvement opportunities
• Need informed advocates to contribute
meaningfully to design, development and
roll-out of health services in Ireland
• Equally….create the situation where
• patients are the drivers of their own health data,
ensuring it is utilised to improve their health
• patient experience data moves up the hierarchy
of evidence in service design, re-design
Building a new Irish healthcare + research environment
In 2019, Patient Reps are full members of:
• HSE Board
• Many National Clinical Programmes
• Cancer Strategy Implementation
• HSE Drugs Committee
• Rare Disease Tech Review Committee
• Health Innovation Hub Steering Committee
• Ehealth Ireland Committee
• Health Research Board – PPI reviewers
• National Clinical Effectiveness Committee
• HSE National Patient Forum
IPPOSI & The European Patients Academy
• EUPATI produces Expert Patients on
Medicines Research & Development
• Provides Training, Education at EU-level
• 20-member national platform network
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.
Role changes 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 increasingly taking leadership roles and are engaging with pharma,
regulators and HTA bodies. Role changes also imply identity shifts.
IPPOSI Patient Education Programme
in Health Innovation
Blended Learning – online + workshops
3 x 10-week modules
• Clinical Trials
• Regulatory Affairs
• Health Technology Assessment
Current Education Partners
UCD, TCD, HPRA, HIQA, NCPE
1 elearning website - www.patientsinvolved.ie
By end of 2019: 45 ‘graduates’
Power of Education
Championing A Multi-Sectoral Education and
Learning Experience to Open New Pathways for
Dr. Tara Cusack, UCD (Coordinator)
HSE DIGITAL ACADEMY:
MSc. in Digital Health Transformation
University of Limerick led
‘Sometimes it is the people no one
imagines anything of who do the
things that no one can imagine’
‘The Imitation Game’