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

Ireland gets to grips with public involvement in research

There are two ways to get to Dublin City Centre from the airport by taxi. You can either join the traffic that wends its way slowly overground. Or you can take the Dublin Port Tunnel which gets you there in no time at all. On behalf of all harried travellers, can I thank the person … Continue reading Ireland gets to grips with public involvement in research

Why do charities play the numbers game when talking ‘burden of illness’ and medical research?

I notice that there has been a fair bit of news generated today by the charity, Autistica, who have published a study showing that autism costs the UK £32 billion per year in terms of treatment, lost earnings etc. The study was conducted by researchers at the London School of Economics (LSE) and follows one … Continue reading Why do charities play the numbers game when talking ‘burden of illness’ and medical research?

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

The medical marathon; a piece to mark the #LondonMarathon2014

What is, I wonder, the equivalent of Noel Coward's lyric 'only mad dogs and Englishmen go out in the midday sun,' which might encapsulate the phenomenon that is the Virgin Money London Marathon? This morning tens of thousands of runners will set out from Greenwich Park as they do every year with high hopes of finishing two, three, four … Continue reading The medical marathon; a piece to mark the #LondonMarathon2014

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 Fight the good fight: medical research charity advertising slogans

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

Do I detect a slight fumble of the ball in today’s Commons Select Committee report on clinical trials?

Not for the first time I was awake at 3am this morning. Cup of tea in hand, watching American football.  It's amazing how those players keep the ball when so many other players are piling on top of them.  Rarely do you see the thing break free.  They must practice for hours.... The House of Commons … Continue reading Do I detect a slight fumble of the ball in today’s Commons Select Committee report on clinical trials?

The duty falls on all of us to issue that wake-up call to the NHS about its research mission

Last week, medical research charities among others hailed a series of Government amendments made to the Health and Social Care Bill.  These place 'a strong duty across the Secretary of State, the NHS Commissioning Board and Clinical Commissioning Groups to promote research and the use of research evidence.' The amendments are in response to persistent lobbying; their … Continue reading The duty falls on all of us to issue that wake-up call to the NHS about its research mission

CF Trust funding shortage first of many research charity SOS calls?

There is a story in the Observer today about the Cystic Fibrosis Trust issuing a funding SOS to raise #6 million to keep its gene therapy consortium on the road. I also heard from a friend this week who described to me a direct mailing they had from another charity with more or less the … Continue reading CF Trust funding shortage first of many research charity SOS calls?

HEFCE Funding Announcement – Lord Willis Comment

LORD WILLIS, AMRC CHAIR, COMMENTS ON HEFCE FUNDING ANNOUNCEMENT Reacting to today’s announcement of funding allocations for Higher Education Institutions by the Higher Education Funding Council For England (HEFCE) Lord Willis, Chair of the Association of Medical Research Charities (AMRC), said:  “These are uncertain times for science and research with a tightening spending budget and considerable … Continue reading HEFCE Funding Announcement – Lord Willis Comment

Health and social care reforms on trial

What better starting point for today's blog than the comments of two leading clinicians speaking about the importance of clinical trials to patient outcomes.  First, Dr Duncan Wheatley, a Clinical Oncologist and Lead for Research in the South West Peninsula, who is quoted in a BBC Cornwall story today about medical research at the Royal … Continue reading Health and social care reforms on trial

Getting touchy over the information revolution

Over the holidays I caught a BBC Radio 4 item about the days of the touch typist.  It was one of those gems of broadcasting which looked through a narrow lens to tell the listener much about how the world has changed.  It also brought back many memories of my time as a messenger at the old … Continue reading Getting touchy over the information revolution

The 2011 medical research charity in-flight dashboard

Let me be the last to convey my New Year message to the nation!  During my period of annual leave - which is still ongoing I might add but I care about you all that much - I have been thinking about how AMRC's member charities are faring and feeling as we begin 2011.   Mis-spent days … Continue reading The 2011 medical research charity in-flight dashboard

The legacy of medical research

...and another thing. Two weeks ago I blogged about the CAF/NCVO UK Giving report which showed that medical research topped the causes to which the British public gave money.  Well, today, the results of an AA/Populus poll of its 18,000 members have been published showing that of those people planning to leave a legacy to charity, … Continue reading The legacy of medical research

AMRC Opus 125

I can't think of a better way to end the week than to announce our 125th member charity.  'Autistica' is the largest UK charity raising funds for medical research to improve diagnosis, advance new treatments and discover the causes of autism. The charity has been funding medical research for 6 years, and funds project grants, programme … Continue reading AMRC Opus 125

Charity donations stutter to life in recession; medical research remains most popular cause

At our AGM last week, I held a workshop with our newly launched small charities network.  When asked their top concern, they almost all pointed to the difficulties of raising funds in the current climate.  Funds and fundraising are always the top headache for charities but in this sort of economy the difficulties are accentuated. … Continue reading Charity donations stutter to life in recession; medical research remains most popular cause

Up a ladder with the public health white paper

If you refuse to walk under, or indeed climb, ladders then this blog is not for you. The public health white paper is to be launched tomorrow (Tuesday).  There has been much trailing of various proposals that will likely appear in the document - from providing vouchers to school children who walk to school, to a … Continue reading Up a ladder with the public health white paper

Earl Howe's Speech at the AMRC AGM

 I thought you may be interested in this extract from the Health Minister, Earl Howe's, speech to out AGM on Wednesday: It also gives me pleasure to note [that] AMRC member expenditure on research having exceeded £1 billion for the year for the first time. Given the economic circumstances, I think this is something about which … Continue reading Earl Howe's Speech at the AMRC AGM