While you were away…..10 things you may have missed in public involvement in health research since last year!

A Happy New Year. Here are ten things you may have missed while away. Or could possibly miss over the next 12 months if you don’t know about them now!

  1. The NHS Long-Term plan (#NHSLongTermPlan). It’s being published tomorrow. Complete with a section on research and innovation that will encompass a focus on public engagement and participation. But, in advance of the launch, the Department of Health press office has been serving bigger fish for frying (pun intended) in the Sunday media including Government plans on prevention, mental health and obesity. The fact that Government has gone from a position of anti-‘nanny state’ to ‘wagging finger state‘ just shows that irony is alive and chronically well in Whitehall and Westminster at least for another year. Praise the Lord.
  2. The BMJ has pronounced its pledges for the New Year including requiring all authors to detail plans for disseminating research results to participants and communities.   Some things never change – like other organisations making up for the failings of research funders to lay down the law in the first instance. Ho hum.
  3. We should start 2019 off on a bright note should we not? So what better than this excellent paper in Research Involvement and Engagement looking at ten years of involving young people with cancer as co-researchers in the BRIGHTLIGHT study. A triumph.
  4. I have a hunch that 2019 might be the ‘Year of Training’ in public involvement in health research. Just before Christmas NIHR launched a new, online course on public reviewing of research.  Expect more training and support goodies to come from various quarters including the imminent launch of INVOLVE’s guidance on being a co-applicant in research. Watch this space.
  5. The Imperial Patient Experience Research Centre made a name for itself last year with some feisty bits of innovation such as its PPI cafe.  Philippa Russell, a service user, wrote this blog for them on 9 things she has learnt about public involvement. I rather like #5 – ‘ we should talk about seldom heard researchers, not seldom-heard publics.’  Philippa – you’re my #1! (All the others on your list can drop down a place.)
  6. Reading anything by Peter Beresford is the equivalent of going to a PPI spa. You will feel cleansed by it and ready to face the world afresh, spurred on by his sense of humanity and social justice.  Set yourself up for the year and read this –‘Public Participation in Health and Social Care: Exploring the Co-Production of Knowledge.’ He’s right, as ever.
  7. If we can bet on one thing it’s that patient data and all that transpires from it is going to be as hot a topic this year as it was last year, and the year before, and the year before that. But what if it could be a unifying force rather than the rather divisive issue it has been perceived as. Health Data Research UK – the organisation that likes to share data – is holding a ‘Frontiers Meeting’ for patients, carers and patient groups on 22nd January. More details here.
  8. Having spent a terrifying 2 hours watching the brilliant ‘Free Solo’ I am reticent about recommending anyone go without ropes. But this will be the year we learn how our Test Beds and Freestylers got on with using the UK PPI Standards and then refine them. In the meantime here’s free solo Elspeth Mathie and others talking about how they are getting on with them in the East of England.  The only way is up. (Note to self – are there mountains in Eastern Region……..).
  9. Other things worth looking out for in 2019 include an imminent paper setting out public involvement principles for health data research, the third Patients First conference this time being hosted by ABPI, AMRC….AND….NIHR, more from the International Network for Public Involvement in Health and Social Care Research including a webinar series, stuff on ‘impact’ (is there any other way to describe what happens in ‘impact’), announcements on the next bearer of the INVOLVE contract, details of the next NIHR campaign for International Clinical Trials Day in May, and much, much more,
  10. Please tell us about your experiences of being involved in NIHR research. Survey here. We are close to 750 responses and the survey will remain open now until 14th January 2019.  Yes, as National Director I can make world-shattering decisions like extending deadlines on surveys. Just like that. But only for another year. What a time to be alive.

Let’s get cracking.

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