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 NIHR gives ‘chapter one and verse’ on patients and the public in research: 2012/13 annual report published
Here is a gripping report from this week's 'Adweek' (based in New York) about the new marketing strategies being used by pharmaceutical companies. Don't be put off by the reference to 'Obamacare.' The story is equally applicable to the United Kingdom. For it is essentially a tale about how disease is being re-packaged. Patient data is the new … Continue reading The truth, the whole truth and nothing but….pharma
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 A commercial break of sorts: (Dr Ann-Gel) Palermo comes to Bristol 25th Sept: book a place
It was so humid when I stepped onto the sidewalk it felt like I was treading water. A threat of storms hung in the air, battleship colour clouds steaming slowly across the horizon. Far from here but menacing nonetheless. An occasional spot of rain found its way on to the floor; a steady hum of a/c … Continue reading 1-HELP-CUREIT
This week, patients got a couple more options for finding out about clinical trials they can take part in. Patientslikeme (which was launched in the United States a few years ago) has unveiled its new new clinical trials site which you can find here. Patientslikeme is capturing a lot of attention here in the UK … Continue reading New websites launched for people looking to join a clinical trial; but will patients want a ‘coming together’ at some point?
So here's my unsubstantiated personal theory. It is that one of the root causes of the problems besetting today's NHS' is our failure to pay proper heed to the growing crisis in accountability and responsibility that has been a feature of our increasingly complex health system over the last seventy years. From almost the day … Continue reading A bit of a public involvement mash-up including that idea for an NHS Civil Society Assembly
Current Controlled Trials (CCT), which aims 'to increase the availability, and promote the exchange, of information about ongoing randomised controlled trials worldwide,' has appointed a new advisory board to help it in its work. Other than yours truly, the Board includes Ben Goldacre and Paul Wicks (PatientsLikeMe) among its members, and is drawing on international … Continue reading Current Controlled Trials (CCT) appoints new advisory board
I get the feeling that this might not go down well. But I noticed this on the 'wires' this evening and you really have to say: 'why not?' The New Zealand Government is launching a $1million advertising campaign next month in which the public will be asked to help identify the scientific challenges which should … Continue reading If NZ can do this why can’t we?
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?
'Pedestrian freight.' It is a term I had not come across until last week. I believe it is the phrase once used inside train companies to describe you and I, the commuters who throng with fortitude through our stations up and down the land every day. Perhaps it still is, I don't know. Such 'internal' phrases can … Continue reading We need more than better chat-up lines to increase participation in research
The weekend beckons but given the 'transparency' theme to the week here is something to ponder. US Congressman Tom Reed has tabled a bill in the House of Reps with the purpose of strengthening the reporting requirements on clinical trials so that negative and positive trial results are published. It is being supported by the Cancer Mission2020 lobby … Continue reading US congressman tries the legislative route to ending bias in clinical trials reporting
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 Spirit of ad-venture shown by charities in funding drug research or a sign of desperate times?
The National Cancer Research Institute (NCRI) is on a recruitment drive for consumers (patients, carers, relatives and members of the public affected by cancer) to join one of their Clinical Studies Groups (CSGs). These Groups are pivotal in driving new ideas and setting the agenda for cancer research so a patient voice is essential. There are ten … Continue reading Help set the agenda in cancer research….
With the budget not too far away, it is that time of year when organisations up and down the country are putting last-minute submissions into HM Treasury. Give more money into this, lower tax here, or there, they say. Very few, if any, will call for this or that to be cut. And while some … Continue reading It’s all in a name: a Citizens Innovation Fund
I am in international mood today. From the United States to Australia. Unfortunately not via Hawaii. This was sent to me this morning and it's basically a report of a paper appearing in the Journal of Internet Medical Research about the viability of using social media in medical research. Interesting snapshot discussion around the pitfalls - i.e. … Continue reading Social media and medical research, a story from Oz
Image via WikipediaTo begin with, this blog was going to be about the portrayal of clinical trials in popular drama, inspired by the current US show 'The Big C.' The latest episode runs on More4 tonight at 10pm. If you haven't seen it, then I strongly recommend a viewing. It is well-written, honest - to the point of sassy at … Continue reading “I thought, if nothing else comes out of this, I might be of service to other people” – ‘The Big C,’ NPR and clinical trials talk
We don't talk nearly enough about social care research. I sometimes wonder whether we have 'over-medicalised' the health research agenda at times, so that all we shout about are new medicines and treatments - me included. It is a trend that seems counter to the needs of our society and also the changes in the … Continue reading Social care research opportunities
Image by erjkprunczyk via FlickrDaniel Cressey at Nature has written this report from last week's meeting of the European Forum for Good Clinical Practice which took place in Brussels. The basic thrust of the discussion at the meeting was that information given to patients prior to them signing up for a clinical trial: is often vague, too long, … Continue reading Ill-informed consent: EU meeting lays into clinical trials small print for patients
The American Association for Cancer Research (AACR) has a rather nifty web-page at the moment with various leading lights in cancer research talking about cancer therapeutics. They include Bob Brown, chair, translational oncology, Imperial College London. And hear is a rather nifty video explaining drug trials done by Channel 4. Just click on the picture … Continue reading International leaders in cancer research in conversation and a new Channel 4 video on clinical trials