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Public involvement in research should be “second nature” by 2025, review concludes

BMJ 2015; 350 doi: https://doi.org/10.1136/bmj.h1913 (Published 09 April 2015) Cite this as: BMJ 2015;350:h1913
  1. Ingrid Torjesen
  1. 1London

The National Institute for Health Research (NIHR) is a trailblazer for public involvement in research but needs a more strategic approach for engaging the public in setting goals and designing research to ensure consistency, a review has concluded.

The Breaking Boundaries review was commissioned by the director general of research and development and chief medical officer in March 2014 to assess how successful the institute has been in achieving public involvement and to make recommendations to build on the achievements so far. The review was led by INVOLVE, an organisation funded by the NIHR to support public involvement in NHS, public health, and social care research. Its report, published last month, set out a vision for public involvement with NIHR by 2025.1

In a foreword to the Going the Extra Mile report Simon Denegri, NIHR national director for patients and the public and chair of INVOLVE, wrote, “Based on the views and opinions we have heard, there is no doubt in our minds that the NIHR is ahead of other government research funders at home and abroad in the extent to which it has incorporated public involvement into what it does.”

However, he added, “[The NIHR] must be seen to develop a relationship with the public such that it becomes second nature to what it does, as integral to the research it funds as accurate measurement.” He predicted that, in the future, “research without evidence of public involvement would be considered flawed” because openness and transparency are vital for maintaining the public’s confidence in research and its support in the application of the findings.

The review found more than 200 “public involvement leads” across the NIHR and nearly 700 public contributors involved in reviewing over 1000 applications that the institute received in 2013-14. The institute is involved in 20 active James Lind Alliance Priority Setting Partnerships, which bring together patients, carers, and clinicians to identify research priorities in a range of disease areas and which are becoming increasingly influential with research funders.

However, “The growth and expansion of public involvement has inevitably outgrown current approaches and is causing issues of accountability, consistency and continuity,” the report noted. “It is evident that many colleagues—particularly at a local and regional level—are inhabiting an uncertain planning and funding environment in which an emerging activity such as public involvement is highly vulnerable. Overall, this suggests a lack of overall strategic prioritisation and planning for public involvement across NIHR.”

The report outlined six strategic goals that the institute should work towards for 2025. These include ensuring that opportunities to engage with research are made visible to the public and seized; that public involvement is locally driven but strategically consistent; that the public’s contribution is valued and required as part of high quality research; and that evidence of what works is collected and disseminated.

The report also gave 11 specific recommendations for achieving this vision, central to which is that the institute should commission the development of a set of values, principles, and standards for public involvement. All NIHR leaders, funded researchers, and staff should also receive an induction in public involvement, it added.

The report said that the institute’s national director for patients and the public in research would establish a leadership group to oversee the implementation of the recommendations, to be supported by a small delivery group of champions from each region. These champions will assist the NIHR’s coordinating centres and infrastructure organisations to begin to align their plans with the NIHR’s strategic goals identified in the review.

Also this year the NIHR national director will lead work to encourage the sharing of success stories of how public involvement has added to the reach, relevance, and refinement of NHS research to improve health and wellbeing.

Notes

Cite this as: BMJ 2015;350:h1913

References

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