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On 25th November, INVOLVE hosted a meeting of PPI leads from across the NIHR to discuss their recently published recommendation for public involvement, and discuss suggestions for training and strategy improvements. The meeting included representatives from regional Clinical Research Facilities, Research Design Services, Clinical Research Networks, CLAHRCs, Academic Health Science Networks, Biomedical Research Centres/Units, Charities and the School for Primary Care Research.

Going the Extra Mile

Going the Extra Mile (GEM) is a set of recommendations developed by INOVLVE to help set goals for PPI and set precedent for best practice. The report highlighted how PPI has changed in the 10 years since INVOLVE was formally set up:

  • Now PPI aims to encompass collaboration, rather than simple involvement, where the development of research is led by both researchers and members of the community that research will impact.
  • The whole field of health research is now covered, as opposed to clinical research alone.
  • PPI in the research process and outcomes are now equally valued.
  • The benefits of a global, rather than national, focus are being recognised.
  • The rise of digital technology and social media provide new avenues for involvement.

The 11 recommendations emphasise areas of best practice and key issues in current PPI practice, which centre on improvement and development of PPI processes and training, collaboration with PPI members, diversity, and review of processes over time.

NIHR strategic overview for PPI

Chris Whitty, Chief Scientific Adviser to the Department of Health, explained that the impact health research has had on health outcomes across the board cannot be understated, thanks to all the individual participants of research. The population benefits from research, and they should be able to influence priorities and the way research is carried out. He also conveyed the NIHR’s commitment to ensure PPI is not just tokenistic in research, but should be present throughout, to ensure research cycle as standard. Diverse PPI communities are necessary to make sure that all patient and public voices are heard.

Issues raised are the visibility of involvement opportunities, especially to ‘seldom heard groups’ such as the elderly and minority communities. A new campaign to address this is being launched in 2017.

Learning and Development needs

PPIAttendees were asked to recommend areas of learning and development across the breadth of PPI, for researchers and lay members, so that INVOLVE can identify priority areas.  These included issues surrounding diversity, training, development, impact monitoring, shared resources and platforms for dissemination.

The Tree of Needs: Suggestions by  PPI leads for learning and development

A collaborative Learning & Development Project Group has been set up to include representatives across the NIHR, as a way of addressing these needs and developing suitable solutions to them. The SPCR will be involved in this, focusing particularly on issues of diversity

What makes a good PPI lead, and how do you become one?

Attendees discussed the skills required of a good PPI lead, including management, social media, communications, creative, approachable. They were then asked to discuss potential career paths within PPI. This is a real testament to the work PPI leads are doing in the NIHR, as the role is recognised as a valuable and defined within research organisations. The general consensus was that there isn’t a set pathway, as PPI backgrounds are so diverse (e.g. Academia, Research, Clinical, Communications, Events, Arts, Business, Governance). Instead there are stages of responsibility:

Admin Support → Facilitation → Advice → Strategy

As PPI becomes more embedded in health research a more defined pathway may emerge to complement the defined roles emerging. It is up to institutions to formalise roles and responsibilities, share job descriptions and expectations, and

Next Steps

The next steps for INVOLVE, and the PPI leads generally, is to use the event feedback to develop PPI resources, frameworks and training for the entire NIHR network.

If you are interested in learning more about PPI and how it can benefit your research, please contact your departments’ PPI Officer.