Public involvement will be crucial to new NIHR ARCs and the research implementation agenda #CLAHRCs #ARCs @OfficialNIHR @NIHRINVOLVE @ClahrcP

It doesn't matter where you are in the world patients and carers have the same questions about research. This week I am in Sydney, Australia, at the invitation of the Australia Dementia Forum hosted by the National Institute for Dementia Research.  It has been a fascinating two days. Most of all I have enjoyed meeting... Continue Reading →

Blog news: Life sciences giants join forces to promote young people’s involvement in health research

Some of the leading life sciences organisations in the UK have joined forces to issue a 'statement of aspiration' about the involvement of young people in research saying: 'Collaboration between young people and commercial researchers should become an established and normal way of working. Learning from this collaboration should be actively translated wherever possible to... Continue Reading →

From ‘spacewalking’ patients to Bowie, the literature on public involvement in research reached new Peakes this week

It's one of the hardest things they will have to do.  It is physically and mentally draining.  For many it will feel a lonely place.  The atmosphere will be unlike anything they have ever experienced before. Some will feel as if they are in a state of suspended animation. Others will feel as if they have leapt off a cliff... Continue Reading →

‘How many patients does it take to change a lightbulb?’ Time to get serious about learning and development in public involvement

Question: How many patients does it take to change a lightbulb? Answer: No one knows, they are so rarely asked. The irritating thing is that even when patients are asked to change a lightbulb, they are not given the help and support to do it effectively. It's a bit like asking someone to change one... Continue Reading →

Cystic Fibrosis Gene Therapy Trial testament to the cf community as a positive, patient and persistent partner in research

I hope you will have seen or heard the news today of the positive results of a gene therapy trial for people with cystic fibrosis. And this is how The Guardian is reporting it. Although it is early days and the improvement shown in patients only a modest one, it is nonetheless a very hopeful... Continue Reading →

Consent for medical research comes under scrutiny yet again: time for ethics committees to stop second-guessing the public?

This is a really interesting study published in PLOS ONE today.  Eessentially it's a survey of the attitudes of 2300 participants in TwinsUK (a national biobank) to giving their consent to medical research.  The full paper can be found here. The results of the survey would seem to highlight what has been a growing theme in the... Continue Reading →

In support of the Rome Declaration on responsible research and innovation

After yesterday's publication of the results of the Research Excellent Framework (#REF2014) comes the post-mortem, introspection and then inevitable debate about REF2020. We will have to wait a wee while before we learn more about the impact assessment aspect of #REF2014 and the overall story it tells us about how research in higher education instiutions... Continue Reading →

The Medical Research Council (MRC) has published a refreshed communications and engagement strategy. There is a section on public involvement on P12 of the document which is the fullest narrative I have seen of their corporate intentions around this aspect of working in partnership with the public. It is a good document and important to... Continue Reading →

NIHR and NAPP announce new award for research engagement in primary care

This morning I was the guest of the National Association for Patient Participation (NAPP) whose annual conference entitled 'Quality in Primary Care' is taking place in Leeds today. It marks the end of their annual awareness week. NAPP's members are made up of several thousand Patient Participation Groups (PPGs) in GP practices up and down... Continue Reading →

An invitation from the Health Research Authority (HRA): #patientsasregulatorypartners

Invitation to contribute to workshops about the Health Research Authority’s  Public Involvement Strategy The Health Research Authority is running two workshops to give people interested in our strategy an opportunity to discuss it and how we put it into action. We would like these to include researchers and research funders as well as patients and... Continue Reading →

NIHR announces local opportunities for public to shape Research for Patient Benefit

If this reads like an advert then I apologise but that's what it is.  But it seems a good advert to pass on from the NIHR Central Commissioning Facility (CCF). The NIHR Research for Patient Benefit (RfPB) Programme needs one public member for each of six Regional Advisory Committees. The committees meet three times a... Continue Reading →

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