Breaking boundaries: thinking differently about public involvement in research

The National Institute for Health Research (NIHR) is carrying out a strategic review of public involvement in health, social care and public health research to ‘examine future options for building an active collaboration with the public and making best use of their skills, knowledge and experience in the work of the NIHR’.  It is expected to define a vision and set clear goals for the next ten years.

Patients and the public, researchers and clinicians, the NIHR and other organisations, were asked to contribute their views with a particular focus on the innovations and new approaches that will help the NIHR break new ground plus the barriers and challenges to be overcome in this important area.  This paper is the response from INVOLVE Advisory group members to the Breaking Boundaries Review.

It is expected that the review will report Autumn 2014.

NHS England recently held a 7 week consultation (12 December to 30 January) on the draft NHS England Research and Development Strategy.

The draft strategy lays out 6 objectives to be delivered by 2018. Objective 4 specifically mentions public involvement in research: 

1. To ensure the inclusion of patients in setting priorities for research and participation in the design, delivery and dissemination of research.
2. To promote the ideal that every patient coming into the NHS is offered an opportunity to take part in research.

The INVOLVE Group discussed the draft strategy at their last meeting and, summarising comments from the membership, Simon Denegri, Chair INVOLVE, submitted ‘NHS England Draft Research Strategy: A Response from INVOLVE‘.

The consultation is now complete and NHS England is re-drafting their strategy based on feedback from stakeholder organisations and members of the public. When the final draft has been published we will include it as a news item on the INVOLVE website.

We welcomed the opportunity to submit written evidence to the House of Commons Science and Technology Select Committee inquiry into clinical trials and disclosure of data. Our response is also reproduced in the Select Committee’s report of written evidence

This consultation follows work carried out by the NHS Future Forum on how the NHS Constitution could be strengthened.