Privacy campaigners have reacted with concern to the announcement by Health Secretary, Matt 'Prime Membership' Hancock, that the NHS and Amazon have done a deal to provide health advice through its Alexa smart speakers. The concerns need addressing although I feel a lot more chilled out about it than some of the things Alexa already … Continue reading A conversation with Alexa about public involvement in health – ‘Sorry, I don’t know that one.’ #digitalPPI
According to the recent national survey of people's experiences of being involved in National Institute for Health Research (NIHR)*, one in five patients, carers and members of the public told us they had been a 'co-applicant' in research. An equivalent number described themselves as being a 'member of a research team.' As a member of … Continue reading New guidance on what it is to be a public co-applicant in research launched by @NIHRINVOLVE @HRA_Latest and @NHSRDForum
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 Public involvement will be crucial to new NIHR ARCs and the research implementation agenda #CLAHRCs #ARCs @OfficialNIHR @NIHRINVOLVE @ClahrcP
I do try to live up to my Tunbridge Wells postcode by firing off regular 'disgusted' letters to the press and, in particular, The Daily Telegraph (DT). On Monday Erik Nordkamp, Pfizer's Managing Director, wrote this article about the importance of the life sciences industry to a post-Brexit economic strategy. So I sent this to … Continue reading Patients and the public are vital to science’s role in a post #Brexit Britain. A response to Pfizer’s MD, Erik Nordkamp
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 Blog news: Life sciences giants join forces to promote young people’s involvement in health research
I once told a conference that it was my perception that rare disease communities were in a stronger position to put research at the top of the agenda; that patients, carers, clinicians and researchers found it easier to get around the table in these areas, were able to work more closely together and mobilise for … Continue reading Understanding why people with rare diseases lose out on research may help those with other more common conditions @rarediseaseday
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 From ‘spacewalking’ patients to Bowie, the literature on public involvement in research reached new Peakes this week
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 ‘How many patients does it take to change a lightbulb?’ Time to get serious about learning and development in public involvement
Today's rare foray onto the UK political scene by Tony Blair reminded me of a simpler time when politicians just used to repeat the same word three times for added emphasis. Or was it the daleks who used to do that? Funny how nightmares and the stuff of dreams can sometimes get confused in this way. Should either … Continue reading Blog: Consent, consent, consent…….new public dialogue report from @HRA_Latest
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 Cystic Fibrosis Gene Therapy Trial testament to the cf community as a positive, patient and persistent partner in research
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 Consent for medical research comes under scrutiny yet again: time for ethics committees to stop second-guessing the public?
You'd think that Aintree Racecourse, home of the Grand National, would be the perfect venue at which to dwell on the barriers to how we involve the public in research. What with 'Bechers Brook' and 'The Chair,' fences over which horses and riders stumble and tumble every year. It would only be right to follow suit, would … Continue reading Blog: Citizens in research: what’s your story going to be in 2015?
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 In support of the Rome Declaration on responsible research and innovation
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 MRC publishes new communications and engagement strategy (plus new film!)
On my travels so a cut and paste of a news release about an exciting new project. Those who know Y Touring will also be pleased to hear that it has found a loving home at last. New theatre company: Theatre of Debate Ltd. announces inaugural project Press Release: 13 November 2014 The creation of … Continue reading Public involvement in research to be turned into drama in groundbreaking new play
This morning I listened with interest to the news item about today's Court of Appeal proceedings on whether wheelchairs users have precedence over parents with pushchairs on buses. I know where my sympathies lie. With the wheelchair user. On balance, the consequences of denying them access are likely to be more serious and difficult to … Continue reading Who’s making way for who in public involvement?
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 NIHR and NAPP announce new award for research engagement in primary care
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 An invitation from the Health Research Authority (HRA): #patientsasregulatorypartners
....despite the temptation. Summer means many things for me. One of them is keeping track of the football transfers. Here's hoping that the Eagles do manage to persuade Ronaldo to South London! The comments that managers make about players never cease to amuse me. One of the most common goes something along the lines of: 'He's … Continue reading Clinician resistance to research may require an arm around the shoulder not a red card
'I would like to know what I want to know' - a participant-led approach to giving consent to taking part in clinical research