Science historian and Guardian science blogger, Vanessa Heggie (@HPS_Vanessa) has written a fascinating piece about how AIDS activists among others changed the way we run clinical trials and persuaded researchers to adopt new methods. That's certainly the history lesson passed down to me as Chair of INVOLVE by previous members. They will tell you that, before we ever talked... Continue Reading →
NIHR gives ‘chapter one and verse’ on patients and the public in research: 2012/13 annual report published
Forgive me. For once, I write with a semi-official hat on. But this afternoon feels like a bit of a milestone moment in lifting public involvement in research ever higher on people's agendas. If you have heard me speak in public then you will know I start by saying how proud I am that the... Continue Reading →
A commercial break of sorts: (Dr Ann-Gel) Palermo comes to Bristol 25th Sept: book a place
Community-based Participatory Research: Unlocking the potential - 25th September in Bristol, 14.30-16.00. Dr Ann-Gel Palermo is an experienced community activist researcher, involved with numerous organisations, local and federal committees in the USA concerned with public health and health disparities. She is chair of the Harlem Community & Academic Partnership (HCAP) which is a New York... Continue Reading →
Survey: Cancer patients and research – the signage is there but not the opportunity to take part
You know how the story goes. Cancer is way ahead of other conditions when it comes to patients having the opportunity to participate in clinical research. But there's still lots of room for improvement. Today NHS England has announced the results of the annual National Cancer Patient Experience Survey. Almost 70,000 patients took part in... Continue Reading →
Moorfields research team reports on benefits of public involvement to eye patients and staff
Sometimes it is the lot of the blogger to feel like the producer of 'Have I Got News For You.' One's research can taken you to all sorts of places you didn't know existed. Then again it can also turn up some gems. This morning I blogged about the WHO report on medicine priorities and... Continue Reading →
Blog: We have the public to thank for this week’s well-informed decisions in health research
We have had two pieces of good news about health research of patient benefit this week. First, the National Institute for Health and Care Excellence (NICE) issued new guidance saying that tamoxifen or raloxifene taken daily for five years can cut breast cancer risk by 40%. This means women at risk of developing breast cancer have... Continue Reading →
Generation R: young people improving research event: 11 Sept 2013
Been meaning to post this for a while and not just because the poster design is going to brighten up my blog pages for a while. Our Medicines for Children Research Network (MCRN) really has been an exemplar for involving young people in research. Find something as good across Europe and I will eat my... Continue Reading →
Music Exposure Study: Please take this quick test + help us learn how music affects l/term hearing
Not often that I do this but this important 'Music Exposure Study' study is looking for thousands of volunteers and I thought I would help....Please take part and also retweet. You may have seen this hearing impairment study announced earlier last year. Researcher, Rob Mackinnon, based at the NIHR Nottingham Hearing Biomedical Research Unit is... Continue Reading →
Comment piece: New mental health research charity springs from an unlikely quarter #mentalhealth
It has been in the works for a not inconsiderable amount of time. A slow burner if you like. So it somehow seems fitting that the first flames should flicker almost unnoticed. Yesterday, Research Fortnight's Adam Smith wrote about a new mental health research charity to be launched next year with a hefty £20 million... Continue Reading →
And people wonder why we are so passionate about public involvement
There are a few minutes until I catch my train. It is just enough time to draw your attention to this excellent piece in the BMJ written by a patient, Matilda Hale, about her battle with fatigue as a result of liver disease, the complacency of the medical profession and the support she gained from... Continue Reading →
NHS leaders on public involvement in services and research
Just thought I would pass on these two pieces by Candy Morris, Research Champion for the NHS, and Mike Farrar, CEO of the NHS Confederation, respectively, about the importance of public involvement in the NHS. Candy's article appears in the Department of Health's regular bulletin 'The Month,' and focuses on public involvement in clinical research.... Continue Reading →
World Alzheimer’s Day – from timebomb to tsunami (PLoS an update on patient information and placebos)
Expect lots of news pieces this week about Alzheimer's disease ahead of World Alzheimer's Day (WAD) which takes place on Friday 21st September. This is one of the better ones I have seen, from the Observer yesterday. Interesting how the language has changed although the message has not - what was once called a timebomb... Continue Reading →
Cancer Research UK to get a new look
I noticed this in Civil Society from a few hours ago. Cancer Research UK (CRUK) - the largest publicly funded medical research charity in the UK - is reported to be launching a new identity in September to coincide with the 10th anniversary of its establishment from the merger of Cancer Research Campaign and the... Continue Reading →
Oldham CCG’s Fairness Commission – one approach to public involvement in the new NHS
I hadn't seen this before...no doubt I am one of the last, as usual. It is an article by Dr Ian Wilkinson, the accountable officer for Oldham Clinical Commissioning Group (CCG), which appeared in Pulse magazine. He describes their approach to public involvement with particular reference to the establishment of a 'Fairness Commission.' The Commission's report can... Continue Reading →
HSJ ‘Progressive Research Culture’ Award 2012: Open for entries
It's that time of year again to get your local NHS Trust to enter this year's Health Service Journal (HSJ) 'Progressive Research Culture' Award. This follows the success of last year's award which saw over 40 Trusts enter. Further details from the NIHR CRN CC website. I'm delighted that the nine criteria include these two: - Evidence of... Continue Reading →
Smart guides to public and patient involvement in your local NHS (i.e. Healthwatch, CCGs etc)
Here are four exceptionally useful guides to ensuring good public and patient involvement and engagement in the new local NHS structures such as Healthwatch, CCGs etc. Get smart about engagement series introduction Engagement for commissioning success Working with lay members and patient representatives Working with LINks and local HealthWatch My sense is that CCGs are... Continue Reading →
Health Information Governance Review: Caldicott at Health In4matics
I thought that people might be interested in this report from the Health Service Journal (HSJ) of a speech that Dame Fiona Caldicott made at the Health In4matics conference earlier this week. She discusses the challenges for GPs in providing patients with online access to their medical records. I heard this week that the Department... Continue Reading →
New paediatric research facility opens at Alder Hey
A new paediatric clinical research facility has opened today at Alder Hey Hospital in Liverpool. Funding has come from the university, an Alder Hey appeal, and the National Institute for Health Research (NIHR). A very important development for children and their parents and the region's growing profile as a hub of nationwide efforts to improve child health. Click... Continue Reading →
Exploring the partnership between patients and researchers – photography exhibition at UCH, London.
If you are at a loose end between now and the end of June, then this exhibition at the Street Gallery of University College Hospital looks well worth the visit. Award winning photographer Clare Parks joined forces with researchers and patients to explore their feelings about clinical research in photographs. The images are really quite... Continue Reading →
How evidence empowers consumers…from the Cochrane Collaboration
The Cochrane Collaboration has just launched a new website which explains how systematic reviews work, and the ways in which consumers can use the Cochrane reviews to inform decisions about their own health. Entitled 'YourHealthNet' there are some very honest and candid appraisals of the usefulness of Cochrane reviews, how the evidence can be both empowering but also... Continue Reading →
