PATIENTS – SCIENCE – INDUSTRY

Derick MitchellJan 14th, 2016

My presentation today

• IPPOSI?

• Patient involvement in Research• Clinical Research / Clinical Trials

• Patient Training • European Patients Academy (EUPATI)

IPPOSI? Who?IPPOSI

Unique partnership of Patient Groups, Industry and Science

Expedite the development of and patient access to innovative therapies

Priorities• Bring a patient perspective to clinical research, connected health, health economics

• Actively influence policy that impacts on research + access to innovative therapies

“Putting patients in policy and medicines development”

IPPOSI Members – Patients’ Organisations

IPPOSI Members – Science

IPPOSI Members – Industry

Leadership

Other Stakeholders

Patient Experts

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?

Good Shepherd

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

Graham Love, CEO Health Research Board

Clinical  Trial  Activity  in  Ireland?

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

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Irish public perception

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

• 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

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Real solution? - The ‘Expert’ PatientIPPOSI Training for Members

• Clinical Research• Health Technology Assessment• Pharmaceutical Code of Practices• Health Informatics (coming soon!)

IMI-EUPATI produces Expert Patients on Medicines R&D

• Training & Education• Disseminates through national platforms

EUPATI  Patient  ExpertsTraining  Course

EUPATI develops patient educationtargeted 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!

IPPOSI = 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

The  EUPATI  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.

2016 – Expert Patients on the road…..

April  NUI  Galway

June  21stUniv.  of   Limerick

October  4thDublin  Castle

AugustBelfast  (tbc)

JulyCork  (tbc)

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

Take Home Messages

Patient involvement can improve research quality

Education + Training of both patients & researchers is key

@IPPOSI www.ipposi.ie