I note that it is London Fashion Week. I look forward to finding out what colours are ‘in’ or ‘out,’ what I should or should not be wearing over the next 12 months.
Science is no stranger to fashions or trends. All of a sudden you can find yourself deluged with reports and the such like about a particular topic. It’s not always clear why. Or what might have prompted it. But there you go.
I suspect we will be talking a lot about stratified medicine this autumn. Last Thursday the Association of British Pharmaceutical Industries (ABPI) held a roundtable to launch a progress report on its 2009 ‘white paper’ on stratified medicine. The report is entitled ‘The stratification of disease for personalised medicine.’ It notes the solid progress made in the UK over the last five years but says we are possibly off the pace if we want to be a world leader. My colleague Louise Leong has written a helpful blog here summarising the report which you can find here.
ABPI is also hosting a follow-up conference on stratified medicine on 20th November with Alastair Kent from the Genetic Alliance UK taking up the patient mantle.
The ABPI notes in passing some of the issues around patient and public information and understanding that need to be addressed. But no more than this.
So, if you want a real insight into the issues for patients and the public, Irecommend you read the new report out today on Innovate UK‘s (formerly known as the Technology Strategy Board (TSB)) website. It’s called ‘Stratified medicine: a public dialogue.’ And it summarises the public dialogue exercise conducted by OPM earlier this year.
I confess to being a little surprised that I stumbled upon the report today because I was on the Oversight Group and hadn’t received any advance notice that it was coming out. Maybe I just missed it totally although I don’t think I did. It seems a little discourteous to myself and other ‘Oversight’ members to say the least.
Regardless of this, it is a shame that such a report is not getting more of a push by those who commissioned it. This is important stuff. And some of its messages are important matters of debate even if they might not be that palatable to those who would prefer a smooth scientific consensus to rule the day.
In particular, the OPM dialogue exercise identified challenges in four key areas as follows:
Definition and communication: challenges
— Having a clear, consistent definition of stratified medicine
— Presenting a realistic picture of stratified medicine, its pros and cons
— Continuing to engage the public and patients
Implications for patients and care: challenges
— Support patients to make sound treatment decisions
— Support patients for whom there is no current treatment
— Provide the right facilities and training to healthcare professionals
Social issues and consequences: challenges
— Understand and mitigate any implications for equality
— Define the role of the private sector in developing stratified medicine
— Develop understanding of the costs/benefits of stratified medicine
Research, testing and data sharing: challenges
— Give research participants a choice about how and who uses their data
— Reconcile the role and perception of the medical research industry
— Engage the public in regulation on data sharing
That last section will be of interest to those people who have followed the debate around sharing of personal data.* What it says is that the public want to be part of research that reflects their needs and interests. But trust is not at the levels it should be to make them feel confident and comfortable when it comes sharing data. Especially when they see this data being shared with the private sector. That’s the task ahead of us all – to build this level of trust.
I rather liked the comment in the report from a participant in the dialogue exercise: that the story of stratified medicine needs to be told from the point of view of the person in the clinic and their health professional. Not from the point of view of a Minister or the organisations it might benefit.
Perhaps the rubicon yet to be crossed is that the proponents of stratified medicine continue to parade its wears on the catwalk and have yet to appreciate that, for the rest of us, it’s a question of what it will look like ‘off-the-rack.’