A lab-based environment should be no barrier to public involvement in research #userinvolvment

I am often asked whether it is difficult - if not impossible - to involve the public in laboratory based research where researchers have limited or no direct contact with patients and the public. My answer is that it might be difficult but it can be done. And the benefits can be significant.  The real challenges... Continue Reading →

Is it time to give patients the opportunity to self-refer themselves to take part in NHS research?

Harpal Kumar, the Chief Executive of Cancer Research UK, yesterday posted a blog about the new task force he is leading for NHS England on cancer diagnosis.  The aim of the task force is to enable people to get an earlier and speedier diagnosis of their tumour in the future.  But it will also be looking at treatment and... Continue Reading →

Spend £1 on cancer research and get 40p back every year: what’s not to like?

Today the All-Party Parliamentary Group for Medical Research holds its summer reception in parliament. This annual event has become an important fixture on the health research calendar. The 'great and the good' assemble to focus on a key issue of the day and to network. At some point in proceedings they will be addressed by... Continue Reading →

Pharma is just not wired to act in the public interest when the chips are down

It has been an interesting 24 hours for some of our goliaths of research funding. Starting with the positive, Cancer Research UK (CRUK) rolled out its new research strategy this morning: 'Beating Cancer Sooner.' Its bold new vision is to see 75% of people surviving the disease in the next twenty years. That's compared to the 50%... Continue Reading →

Thoughts on some of the latest health research stories in the media

I hope you have had a good Easter weekend. There have been three health research stories in the last week that have caught my attention.  Each story is significant in its own right.  But they also share a common theme around the importance of public participation in research. First up is the research published by King's College... Continue Reading →

Fight the good fight: medical research charity advertising slogans

Over the last few months, I have been noting down charity advertising copy as I go about London. Here are ten. Notice any trends? Diagnosed with blood cancer, Chloe only has one hope...YOU. Text HOPE.... Anthony Nolan Trust 2013 Elliot is deafblind. He can't tell it's Christmas. Text TOY to....Sense Help us beat cancer sooner... Continue Reading →

Musings on #patientdata and: ‘the moral case for public involvement in research is dead, long live…’

There's a big push on #patientdata at the moment. Leaflets explaining how patient data will be shared in the future are being stuffed through people's letter boxes.  This is part of an initiative called 'care.data.' Medical research charities have meanwhile funded a national newspaper advertising campaign exhorting the benefits of sharing patient data for research. The... 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 →

Round round get around I get around – Caldicott2, patient data, dementia portal and more!

So sang The Beach Boys who were on Radio 2's 'In Concert' this week.  Not that I'm a great fan but it seemed apposite given my week.  This has involved visits to TrialReach, Oxford (well, virtually!) to discuss plans for public involvement in the Biomedical Research Centre there, my good colleagues at BioMedCentral and, tomorrow,... Continue Reading →

Spirit of ad-venture shown by charities in funding drug research or a sign of desperate times?

From The Economist in New York, a short but interesting piece on the growing collaboration between charities, pharmaceutical and biotech companies in the US to bring new drugs to market.  More specifically it looks at the 'venture philanthropy' model being adopted by charities there to support clinical trials.  I'm not quite sure I'd characterise it as... Continue Reading →

Cancer patients seeking information about their condition want to know about clinical trials, study shows.

This is a fascination study published by the open access journal ecancermedicalscience.  I think it was actually published in November but only came to my attention via Twitter yesterday. It looks at the needs of cancer patients and organisations across Europe when it comes to online information.  The results are based on a pan-European survey and questionnaire... Continue Reading →

Charities wade in on Leveson and media reporting of science

The Association of Medical Research Charities (AMRC) together with Cancer Research UK and Wellcome Trust have this afternoon published their response to the Leveson inquiry into the culture, practice and ethics of the press.  See first item listed under 2012 on this page at the AMRC website. The submission makes good points and I learnt... Continue Reading →

Article by Cancer Research UK Chief Executive, Harpal Kumar

publicservice.co.uk is running a piece today by Cancer Research UK's Chief Executive, Harpal Kumar.  I thought his second bullet point under policy priorities re: enabling patient groups to contribute to health challenges quite interesting.  It would be good to understand a bit more what he means by this.  Cancer Research UK is more research funder... Continue Reading →

Patients helping cancer research go stratospheric for the benefit of others

Cancer Research UK's patient recruitment drive which has just got going as part of its Stratified Medicine Programme is getting  a lot of attention today. One patient, Wendy, is quoted in the news material as saying: 'Even though I won't benefit from that research, it's comforting to think that my experience with cancer will be... Continue Reading →

Cancer Research UK does not have all the answers..and that’s an invitation to the rest of us

I see that Cancer Research UK last week put out a press statement about the need for the UK to have strategic vision for medical research. You can find further details on their blog and they also issued a document entitled 'Building the Right Environment for Medical Research.' Thoughtfully the announcement and document have been... Continue Reading →

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