26 June 2012

Strategic development of patient and public involvement in a major comparative effectiveness research programme in the UK

NIHR Evaluation, Trials and Studies Coordinating Centre

Alison Ford, Ruairidh Milne, Elaine Williams

Health Technology Assessment Programme

• Established 1993, central government funded• Managed by NIHR Evaluation Trials & Studies

Coordinating Centre• Commissions and manages health research• Primary research and evidence synthesis• Value for money

Health Technology Assessment Programme

Findings published in HTA journal

2010 Impact Factor 4.197: in the top 10% of medical and

health-related journals

“People-focused research in the NHS simply cannot be delivered without the involvement of patients and the public.

No matter how complicated the research or how brilliant the researcher, patients and the public always offer unique, invaluable insight.”

Professor Dame Sally C Davies

Chief Medical Officer for England, Department of Health

PPI established within HTA

• HTA website for topic identification ideas

• Referees for commissioning briefs

• Panel members at prioritisation stage

• Referees for full proposals

But......‘an uneven spread’

Moran R, Davidson P. An uneven spread: a review of public involvement in the National Institute of Health Research's Health Technology Assessment program. International Journal of Technology Assessment in Health Care, 2011;27:343-7.

Rapid growth of NETSCC from 2008

• New programmes, different types of research• Broader portfolio• More identification, prioritisation and funding

decisions• More applicants and studies to monitor• More outputs to publish and disseminate• New opportunities for involvement• More consistent and strategic approach needed

Developing the PPI strategic approach

• Formal project structure• Brief literature review• Workshops with PPI lead staff• Consultation with public contributors• One-to-one consultation with programme directors • Consultation with & support from INVOLVE • Agreement secured with NETSCC Board

The PPI framework

• What NETS programmes must do• What researchers should do• What public contributors can do• Across whole research cycle• Effective PPI activity• Internal research management• Design and conduct in studies

What have we gained?(1) How involvement has changed• Larger, more diverse range of people involved• More information recorded about individual public

contributors’ experience, understanding & interest• Very high rate of public reviewer input to commissioning

briefs and proposals• Public members on boards and panels of all programmes• Research applications show commitment to involvement of

patients and the public in design and conduct of studies• Public involvement more actively monitored in progress of

studies

What have we gained?(2) How NETSCC has changed

• A real commitment to PPI• PPI woven into language of the organisation• Staff knowledge, skills & behaviour• Clear policy and support processes• Boards and panels see public contribution

differently• A team approach to strategic development of

PPI

Key learning for other organisations• It is possible to involve patients and the public in every

aspect of research management• Genuine Board-level commitment is essential• Build components of the involvement approach into the

organisation’s strategy• Networking across the health research community will

bring about valuable contacts and economy of scale • Involved volunteers are not ‘free’• Cultural change takes time

Any questions…?

Alison Ford

Public and Patient Involvement Manager

t: +44 (0) 23 8059 7435

f: +44 (0) 23 8080 5639

e: A.R.Ford@southampton.ac.uk

NIHR Evaluation, Trials and Studies Coordinating Centre

(NETSCC) part of the National Institute of Health Research (NIHR)

Alpha House, University of Southampton Science Park,

Southampton SO16 7NS

w: www.netscc.ac.uk

Acknowledgement:

This activity was funded by the NIHR and carried out by the Evaluation, Trials and Studies Coordinating Centre at the University of Southampton.