March 11th, 2016

PATIENTS – SCIENCE – INDUSTRY

NCPE Training Course on HTA

Derick Mitchell

Patient Involvement in Healthcare Decision-making

Why?

Who?

When?

How?

IPPOSI? Who?IPPOSI

Mission

We expedite development of and patient access to innovative therapies

Unique partnership of Patient Groups, Industry and Science

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”

Partnership Approach

Other Stakeholders

Patient Experts

• Encourage open, constructive dialogue and interaction

• Highlight value that patients can bring

• Develop new opportunities for patients to influence decision-making

IPPOSI Funding

• Grant from Department of Health

(via Health Research Board)

• Industry membership fee

Goals for patient involvement in HTA?

• Democratic

• Scientific

• Instrumental

• Developmental

IPPOSI Partnership with HIQA + NCPE

• HIQA have patient involvement on the advisory board of individual HTAs

• Annual HTA Training for patients through IPPOSI

• List of products under NCPE rapid review available on IPPOSI website

• Irish patient groups exploring measuring patient outcomes with the NCPE

Annual HTA & Decision Training

2016:

“incorporating the patient perspective”

Submission of patient org information

Other jurisdictions?

• European Patients Forum Survey

• SMC• Patient Group Partners

• Submission Form• Patient Org. Registration Form• Guidance (Good Example)

• Public Involvement Network Advisory Group

Values and Quality Standards for PPI

• HIQA• Guidelines for Stakeholder

Engagement in HTA

• EUnetHTA• Stakeholder Forum

• HTAi• Vision: that patient and

citizen perspectives improve HTA

http://www.htai.org/interest-groups/patient-and-citizen-involvement/pcig-resources/hta-resources.html

Irish Educational Platform

• John Dowling, Men Against Cancer

• Caitriona Dunne, Fighting Blindness

• Joan Jordan, MS Ireland

• Katie Murphy, CF Ireland

• Rachel Lynch, FibroIreland

• Damien Peelo, COPD Support Ireland

• Julie Power, Vasculitis Ireland Awareness

• Sharon Thompson, Rare Dis. + Palliative care

8 Irish Trainees

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.

Why?, Who?, When?, How?

EXAMPLES:

• In clinical trial methodology / outcomes

• Incorporate patient preferences in QALY

• Adjusting clinical / review criteria

• In between NCPE recommendation + HSE decision

Take Home Messages

•Develop clear policies for PPI

• Early & Ongoing Involvement

•Need Education/Training for all

@IPPOSI

www.ipposi.ie