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What should we do about vaccine hesitancy?

BMJ 2019; 365 doi: (Published 06 June 2019) Cite this as: BMJ 2019;365:l4044

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Is PPI being privatised?

Recently a press release was issued by the National Institute for Health Research (NIHR) announcing a new NIHR centre for patient and public involvement, engagement and participation and research dissemination. [ This centre will merge NIHR INVOLVE and the NIHR Dissemination Centre, and will become operational in April 2020. Established in 1996, NIHR INVOLVE promotes and supports patient and public involvement (PPI) in NIHR-funded research, and is currently hosted by the Wessex Institute, University of Southampton, having previously been hosted by the University of Leeds. The NIHR Dissemination Centre, established in 2015 as a partnership between the Wessex Institute and Bazian, exists to critically appraise the latest NIHR-funded research, to identify and disseminate the most reliable, relevant and significant findings.

The Department for Health and Social Care (DHSC) appears to have formed a view that there is synergy and, no doubt efficiency savings, to be had in merging NIHR INVOLVE and NIHR Dissemination Centre. It decided to go out to tender to establish this new centre before the end of the current NIHR INVOLVE contract with the University of Southampton. The competition was open with the specification in the public domain and multiple bids received.

We have concerns that the contract for this new NIHR centre is not going to a university, but to a global private company, LGC Group. LGC Group, already hosts the NIHR Central Commissioning Facility, and describes itself as “a global leader in the life sciences sector” promoting “science for a safer world.” In the context of increasing privatisation in the NHS, the gradual privatisation of its research support infrastructure should concern academics, patients and clinicians alike, and particularly those concerned with PPI.

The press release announcing the creation of the new NIHR centre led to a flurry of activity on Twitter from concerned academics, patients and service users. NIHR have since made clear that patients and the public were involved in the procurement process including peer review and panel membership, and that further clarification on the roll-out of the new centre will be issued in due course on the DHSC website.

As people who have worked in the PPI field for some time, we have the following questions about this move: Will the loss of NIHR INVOLVE mean the loss of expertise and organisational memory, resources, and the genuine involvement of patients, service users in research innovation, processes and production? How will service user-led research and service user-researchers be supported within the new centre? What will happen to NIHR INVOLVE’s current work-plan, including the promotion of NIHR-wide PPI standards and the principles of co-production, its on-going diversity and inclusion programme, and its work to establish an international PPI network? How will the Centre’s key functions of PPI and dissemination be integrated? What are the wider implications of the government outsourcing a national research infrastructure to a private company instead of a university? Are LGC Group bound by the same public interest values, research ethics frameworks, equality and diversity policies and dissemination standards as universities?

We look forward to receiving further clarification on these important issues from DHSC and LGC Group.

Jonathan Boote is a freelance researcher and consultant, with particular expertise in patient and public involvement in research. He has been a member of the NIHR INVOLVE Advisory Group, and is currently an associate member of NIHR INVOLVE.
Twitter: @jonathanboote

Competing interests: JB was a member of the NIHR INVOLVE advisory group and is currently an associate member of NIHR INVOLVE

Sarah Carr is Senior Fellow in Mental Health Policy, University of Birmingham and was a member of the Main Group and Empowerment Sub-Group of NIHR INVOLVE from 2002-2010. She has particular expertise in PPI and service user research.
Twitter: @SchrebersSister

Competing interests: SC was a member of the main group and empowerment sub-group, NIHR INVOLVE, from February 2002 until June 2010

Competing interests: SC was a member of the main group and empowerment sub-group, NIHR INVOLVE, from February 2002 until June 2010. JB was a member of the NIHR INVOLVE advisory group and is currently an associate member of NIHR INVOLVE.

07 June 2019
Sarah E Carr
Senior Fellow in Mental Health Policy
Jonathan Boote
University of Birmingham
University of Birmingham, Edgbaston, Birmingham B15 2TT