November 2015

PATIENTS – SCIENCE – INDUSTRY

Patient Involvement in Research

Derick Mitchell

My presentation today

• IPPOSI?

• Patient involvement in Research• Clinical Research / Clinical Trials

• Patient Training • European Patients Academy (EUPATI)

IPPOSI? Who?IPPOSIMission

We expedite development of and patient access to innovative therapies through a unique partnership of Patient Groups, Industry and Science

Priorities• Bring a patient perspective to clinical research in Ireland• Actively influence policy that impacts on research and access to innovative

therapies

“Putting patients in policy and medicines development”

IPPOSI Members – Patients’ Organisations

IPPOSI Members – Science

IPPOSI Members – Industry

Leadership

SCIENCE

INDUSTRY

PATIENT EXPERTS

OTHER STAKEHOLDERS

Inform

Consensus

Non-Lobbying

IPPOSI Funding

• Grant from Department of Health (via Health Research Board)

• Industry membership fee

Patient involvement in research

Distinct from:• Raising awareness• Sharing knowledge• Creating a dialogue with the public• Recruitment of people as participants in research

Active partnership between members of the public and researchers in the research process

Unique insights

Patient involvement in research can:• Provide a different perspective

• Make language + content of information clear and accessible

• Help to ensure study methods are acceptable and sensitive

• Help ensure that research uses outcomes that are important to the public

• Help increase participation in research

What’s happening in Ireland?

Clinical Trial Activity in Ireland?

*Including only open studies, excluding studies with unknown statusData Source: Clinicaltrials.Gov

13

What do Irish people think?

26 12 20 12 29 1

50 15 16 5 14

56 14 11 4 14 1

60 17 14 3 5 2

I would only participate inclinical trials if I was very

sick

I would be willing to supplypersonal medical

information for medicalresearch if it is done in a

confidential manner

I would be willing to donateblood to be used for clinical

research

I think carrying out clinicalresearch in Ireland with theaim of developing new waysto treat many diseases is a

good idea

Strongly agree Agree Neither/nor Disagree Disagree strongly DK

{Base: n=1000, All adults}

Irish general public’s attitude towards clinical research,

Nov. 2009

Conclusion

• Limited understanding of how one can participate • (i.e. donating blood/tissue, medical information)

• Ethical concerns

• Unnecessary Risk

Public information campaignclinicaltrials.ie

Training Patients

• IPPOSI Annual Training

• December 9th, 2015

9:00-12:00pmBoston College, St. Stephen’s Green, Dublin 2

Where can we go from here?More Public Information More Patient & Researcher Training Improve Research Environment

Patients as partners of research: More needs to be done!

“Rare cancers will never be a priority unless the patients make it one. Patients themselves must therefore play a larger role in driving forward the search for therapies.”

Amy Dockser Marcus (@AmyDMarcus)

Good Shepherds

“Involving patients in all your research from design to implementation increases your chances of success”

Graham Love, CEO Health Research Board

“We need to engage clinicians and patients from the start, understand what their priorities are, and explain what the benefits can be, instead of being overly bureaucratic.”Richard Corbridge, Chief Information Officer, HSE

Patient Training

• Patient‘s organisations have unique insights in “real life“ and “real needs“ of patients:

• Clinical trial design• Priority setting• Research policy

• Training required to get the expertise required to contribute to research & development projects

Building a new environment for research

22

IPPOSI & EUPATI

• EUPATI produces Expert Patients on Medicines Research & Development

• Provides Training & Education

•Disseminates through national platforms

The project is receiving 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.

EUPATI Patient ExpertsTraining Course

EUPATI develops patient education targeted towards different audiences

53+50patient experts

EUPATI Educational Toolbox

EUPATI Internet Library

English FrenchGermanSpanishPolishItalian Russian

English

Patientadvocates(12,000)

Health-interestedpublic(100,000)

Three years of EUPATI: Much has been done! …Reflection, consensus, dialogue, community building, Engagement at EUPATI workshops in Frankfurt, Barcelona, Rome, Warsaw, Dublin103 Patient Expert TraineesOnline Toolbox available in January 2016

Areas covered by the Patients’ Academy

1.Medicines development process from research to approval

2. Personalized and predictive medicine

3.Drug safety and risk/benefit assessment of medicines

4. Pharmaco-economics, health economics and health technology assessment

5. Design and objectives of clinical trials (& roles of stakeholders)

6. Patients roles & responsibilities in medicines development

…and NOT:develop indication- or therapy-specific

information!

Irish National Platform

• Rachel Lynch, FibroIreland• Damien Peelo, COPD Support Ireland • Julie Power, Vasculitis Ireland Awareness• Sharon Thompson, Rare Dis. + Palliative care• John Dowling, Men Against Cancer• Caitriona Dunne, Fighting Blindness• Joan Jordan, MS Ireland• Katie Murphy, CF Ireland

8 Irish Trainees

Gone global…..

Take Home Messages

Patient involvement in research is here to stay

Education + Training of both patients & researchers are key principles

@IPPOSIwww.ipposi.ie