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 NIHR announces local opportunities for public to shape Research for Patient Benefit
public involvement
I just walked under the public engagement ladder and survived
My Friday blogs are often philosophical in nature. And so it is today. So what more conducive environment from which to philosophise than the 1.45 from Leeds to London KX. Plato eat your heart out (that's if the at-seat service is working)! Over the last two days I have been caught in a couple of … Continue reading I just walked under the public engagement ladder and survived
New stuff!..Dementia ‘infokit’, ‘Building Research Partnerships,’ CLAHRC Q&As, AHSNs and ABPI
Top initiatives today..... Care to learn to care better. The NIHR Dementia & Neurodegenerative Diseases Research Network (DeNDRoN) today launched their new 'Patients in Research' infokit. It's an excellent free resource showcasing work from across health and social care, stories, ideas, tips and tools. This great piece of kit is all part of a larger effort … Continue reading New stuff!..Dementia ‘infokit’, ‘Building Research Partnerships,’ CLAHRC Q&As, AHSNs and ABPI
Comment: The Sherpa’s story and its relevance to public involvement in health research
I am indebted to a good friend and colleague of mine who, some time ago, sent me this BBC News story from last year. It reports on the rising concerns among Himalayan Sherpas about the lack of regard being shown towards their needs and the environment as scientists tromp all over the local geography. To the … Continue reading Comment: The Sherpa’s story and its relevance to public involvement in health research
The seven mistakes that organisations make on public involvement
I could easily have chosen more than seven. But I was thinking along the lines of the 'seven wonders.' Please do free to comment with an eight, ninth etc... Anyway, here are what I think are the seven most common mistakes organisations make on public involvement. 1. 'A lack of heart and soul:' Not embracing … Continue reading The seven mistakes that organisations make on public involvement
Revised Science and Society Vision: A step forward?
I am in Denmark on a study visit looking at how they do innovation. More on that in a few days time I hope. In the meantime colleagues at the Department for Business, Innovation and Skills (BIS) sent me through the link to their revised vision, aims etc which was published on their website last … Continue reading Revised Science and Society Vision: A step forward?
Friday musings about tsars, conferences and stratified medicines
Today I started to think about the forthcoming INVOLVE national conference. More particularly, what I want to say to this important gathering in less than a month's time. This will be my first conference since taking over as Chair in June 2011 and, since then of course, I have also taken on the new National … Continue reading Friday musings about tsars, conferences and stratified medicines
Is it an industry or a movement we are creating?
In his Guardian blog yesterday, Dick Vinegar, asks a genuinely good question: 'Who is fighting the patient's corner?' He writes about his recent attendance at a Westminster Health Forum conference about Healthwatch, and voices concern that all we are doing is creating just another bureaucracy in the name of patients. A thick, muddy, layer of … Continue reading Is it an industry or a movement we are creating?
The NHS Commissioning Board Draft Mandate and patients in health research
The Shard went up (officially). And the NHS Commissioning Board Draft Mandate came down from on high. All on the same day. Add the odd torrential downpour with its associated misery and these could be Biblical times. I have come to the conclusion that it is my fate to be locked away somewhere remote and with an intermittent … Continue reading The NHS Commissioning Board Draft Mandate and patients in health research
Double whammy by INVOLVE: new resources on diversity and inclusion in public involvement, and impact on research conduct
INVOLVE has published two fabulous resources on some current hot topics in public involvement in research: Strategies for diversity and inclusion in public involvement – this is a supplement to our briefing notes for researchers Public involvement in research:impact on ethical aspects of research – this resource provides examples of the impact of public involvement in the … Continue reading Double whammy by INVOLVE: new resources on diversity and inclusion in public involvement, and impact on research conduct
Health Research Authority (HRA) stocks rise in first public flotation
The word on the street is that yesterday's Health Research Authority (HRA) public and patient involvement workshop - it's first public flotation if I can put it like that - was very successful indeed. That has to be good news. I think we should be encouraged that the team at HRA has barely got its feet under … Continue reading Health Research Authority (HRA) stocks rise in first public flotation
Research impact: One small tweak for HEFCE, one important nod to public involvement
The Higher Education Funding Council for England (HEFCE) yesterday issued the final criteria and working methods for its Research Excellence Framework (REF) assessment exercise. The research press is still full of various academic voices continuing to rant against the whole issue of HEFCE assessing 'research impact' for the first time. Seems to be a waste … Continue reading Research impact: One small tweak for HEFCE, one important nod to public involvement
Cancer voices in medical and health research
I have been meaning to post this for a little while but have been waiting for a break in the action. Just wanted to pass on this excellent publication from independent cancer patients' voices entitled: 'Yearbook 1: Opening the Conversation - A Record of Achievement 2009-2011.' Those designing and writing annual reports might also learn … Continue reading Cancer voices in medical and health research
Why Georgia is an example to us all on clinical trials
This is a piece I spotted in the local press in Wirral about schoolgirl, Georgia Semple, who is a member of the Young People's Advisory Group for the NIHR Medicines for Children Research Network (MCRN). The Group helps with the design of clinical research - from conveying their views and concerns to researchers, to writing … Continue reading Why Georgia is an example to us all on clinical trials
Available in all good GP surgeries – new patient information leaflet on the use of patient data for research
This leaflet 'Your health records saves lives' (click on the picture below) marks the fruits of much hard work by the UK Clinical Research Collaboration (UKCRC) partnership over two years. Conceived, designed and written with patients very much as partners in the process, it seeks to explain how patient data is used for research purposes. … Continue reading Available in all good GP surgeries – new patient information leaflet on the use of patient data for research
Technology pulll-through in research and the role of the public
Next week I shall be taking part in my first meeting as a lay member of NIHR's 'Invention 4 Innovation' programme. I have had a number of conversations with people recently about how patients are and should be involved in the field of what is jargonistically called 'technology pull' - getting new technologies into health … Continue reading Technology pulll-through in research and the role of the public
Canada gets the ‘patient involvement in research’ bug
A few weeks ago I mentioned meeting the Director of the Canadian Institutes for Health Research (CIHR) to discuss public involvement in research. Last night I stumbled on the following announcement by the Canadian Government about the development of a patient-orientated research strategy. Excellent news. I am sure the news has very little to do … Continue reading Canada gets the ‘patient involvement in research’ bug
Science should take heed of the need to make the public its partners if it wishes to avoid calls for its liberation
At the end of last month the Canadian Government announced that it would be going ahead with clinical trials of a controversial new treatment for MS sufferers called 'liberation therapy.' The decision has gone almost unreported outside Canadian shores and yet for those interested in the relationship between science and its public it is a … Continue reading Science should take heed of the need to make the public its partners if it wishes to avoid calls for its liberation
Avoiding the X-factor in using social media for health research
Some of you may have picked up on this interesting study published by Nature Biotechnology and reported by the Wall Street Journal (headline: 'ALS study shows calue of social media as a research tool'). In what the Wall Street Journal describes as an early example of the role that social media might play in clinical trials, … Continue reading Avoiding the X-factor in using social media for health research
PPI Friday
It seems that my Friday blog has become dominated in recent weeks by postings about patient and public involvement. So be it. But before anyone jumps in to criticise, let me assure you of my belief that it is a 24/7 activity! Friday is often quite an interesting day for news. Press officers will tell … Continue reading PPI Friday
simondenegri.com 