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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 currency, social and digital media the marketplace. Companies are no longer selling potions and pills but offering an all-round ‘service’ to patients and health professionals.
The speed with which the private sector can move in this way is dizzying (I thought I was doing well this morning by getting someone to agree some terms of reference!). The sums of money at their disposal, mind-boggling. In fact, the implications of what is happening can feel overwhelming. So much so that it is easy, all too easy, to put on one’s ‘Blockbuster’ voiceover just to up the threatening atmosphere. Yet who isn’t chilled to the bone when a commentator can glibly say in print:
‘For years Lilly has owned diabetes.’
Has anyone told people with diabetes and their families this?
I am sure that many patient advocates will be worried by the scale and speed by which these new approaches are heading our way. But we seem to be in a collective state of un-readiness for this latest chapter in the marketization of health or selling sickness. Or are we just complicit? Either way it makes the work of organisations such as ‘Selling Sickness’ or Sense about Science as well as advocates such as Margaret McCartney who are calling attention to these trends, all the more important.
How will patients be able to source independent advice when the market is smothered by ‘Trojan horse websites’ or apps backed by pharmaceutical companies? How will they be able to identify truths amidst this morass? Can regulators realistically be expected ‘protect and promote’ the public interest in the digital age using the same carrot and stick approaches that have failed in the past? We have barely begun to think through the consequences. Let alone the solutions. And yes, these have to involve the companies themselves.
The danger is that we continue with our obsessions about things like the best model for lay reviewing when such bigger changes are afoot; we can only stay entrenched in land wars about whether something is public involvement versus participation versus engagement for so long surely? Let’s not allow ourselves to become so tamed within our own boundaries that we lose the art of thinking beyond them and tackling new challenges? Otherwise it will all be over when we finally do wake up.
In the meantime, we should remember, there’s no such thing as a free app….
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 the 2013 survey. And for the second year running it includes the results of people’s responses to questions about access to, and participation in research. It is therefore becoming an important tracker of how this aspect of the patient experience in the NHS is changing.
This year’s survey includes a new question about whether people have seen information about research in their hospital. It really is good news that 85% said they had and only 15% had not (I am not going to deal much with regional or local variations today but I invite someone to compare individual Trust survey results against those for recruitment as published by the NIHR Clinical Research Network Co-ordinating Centre (NIHR CRN CC). Perhaps a patient-friendly ‘access map’ is called for?
Disappointingly only 32% of patients said they had had a discussion about research with a clinician or health professional, 68% had not. This is more or less the same result as last year and suggests ‘patient choice’ to take part in research is struggling to get a lift nationally. However, it is worth adding that the survey was conducted prior to the ‘Ok to ask’ campaign this year and a number of other local and national initiatives.
Yet, look a bit deeper and the variations are massive across from Trust to Trust (from 11% to 62%). Reflecting on this and some of the feedback on our ‘Ok to ask’ campaign in May 2013 I would hazard a guess that more focus needs to be given to helping health professionals have these conversations and feel able to signpost patients and families in the right direction.
Finally, 64% of people went on to take part in research and 36% did not. But again the variations are significant from Trust to Trust – from 37% to 94%. Overall though, this result mirrors other evidence about the way people are positively disposed to taking part in research given the chance.
The report does not contain any discussion of possible reasons for the above results and perhaps this will be forthcoming although I am disheartened by the fact that I could see no reference to research in the Foreword to the report.
Much food for thought and I would welcome views…
Sometimes it is the lot of the blogger to feel like the producer of ‘Have I Got News For You.’ One’s research can taken you to all sorts of places you didn’t know existed. Then again it can also turn up some gems.
This morning I blogged about the WHO report on medicine priorities and its call for better tools for evaluating public involvement.
Then, this evening I stumbled across this short article from ‘Optometry Today.’ It reports the findings of research conducted at Moorfields Hospital and published in the British Journal of Ophthalmology about the benefits of public involvement as seen from a patient perspective.
A range of benefits are reported by patients, it says, including increased patient satisfaction and confidence in their care. Health professionals also report educational benefits.
Haven’t been able to lay my hand on the original paper yet…
NIHR Clinical Research Network Survey
Patient and Carer (Lay) Involvement in Research: Your Experience
The National Institute of Health Research (NIHR) Clinical Research Network (CRN) Patient and Public Involvement Steering Group is running a survey to capture how being involved in research impacts on patients and carers.
You should take part in this survey if you are a patient or carer (lay person) who is involved as a research partner or collaborator at one of the Clinical Research Networks.
We will produce a report summarising the findings from this survey. We will use the information that you provide to encourage more people to get involved in research and to improve the experience for all individuals. We will not be identifying individuals by name in the report.
If you are interested in taking part, we would like to hear your views. Please click here to complete the online survey:
The deadline for completing this survey is Friday 26 July 2013.
New websites launched for people looking to join a clinical trial; but will patients want a ‘coming together’ at some point?
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 and one can see why. Although this is still very much a first generation clinical trials site for so-called ‘willing patients,’ I like how it presents options and choices. Its interoperability with other parts of the Patientslikeme site (including the option to join other patients online) is also to be commended. It is well worth a look.
Meanwhile in the States a new site called Reg4All has been launched by the non-profit Genetic Alliance (not to be confused with the UK’s own Genetic Alliance). This one’s a register, inviting you to join others online and share as much as your personal health information as you so wish, to ‘help spark health innovation for all.’ It’s interesting how heavily they plug patient confidentiality with the privacy controls reported as being ‘unprecedented.’ Other than not signing-up at all of course.
Don’t forget there is also the Government’s very own UK Clinical Trials Gateway (UKCTG) whose future development I am very involved in, as well as ClinicalResearch.com, TrialReach, HealthUnlocked, YourTreatmentChoices . Funny how almost all of these sites miss out the spaces between the words in their titles isn’t it? I wonder what that is all about.
Anyway, the market of organisations competing for the attention of patients entering clinical trials gets busier by the day. This seems a healthy thing to me on the one hand. On the other, I feel patients will want to see a ‘coming together’ at some point. Although not necessarily in the way that you might assume; it might take many forms in fact.
Agreement on some common principles and standards for how to operate as in the manner of a learning health system (there are some interesting precedents in the US for this with respect to data use)? Partnership, merger or co-operation? Perhaps formal regulation (by the Health Research Authority)? But, most of all, integration with their care and treatment in the NHS and how this is provided. There will also be a growing demand public involvement in how they work; more than any of the above providers can currently demonstrate. Also,demands for reassurances over the ‘patient experience,’ with the AllTrials agenda just the tip of the iceberg in how I predict people will increasingly set higher expectations with clinical trial providers, and those who recruit on their behalf, before signing the consent form.
Finally, here is a brief interview with Scotland’s Chief Scientist, Dr Andrew Morris. He talks about the importance of research being integrated into NHS care and treatment if we are to grow cohorts of patients who are active in research and the building of systems that enables that. He references the well-known DART initiative in Scotland involving 7000+ people with diabetes.
I’m off to watch the rugby now.
Today the NIHR Clinical Research Network Co-ordinating Centre (NIHR CRN CC) has published the results of a ‘mystery shopper’ exercise it conducted last year to investigate how well NHS Trusts provide information about clinical research. You may have seen a piece in last Sunday’s Observer which trailed this work and you may hear about it on your local radio station during today.
The results which can be found here will not surprise you, with most NHS Trusts not providing patients or signposting them appropriately. The sample is small but, based on my own experience and that of colleagues, I think the findings are likely to be indicative of the picture across the country. As a first round, this ‘mystery shopper’ exercise has been an innovative exercise and I was delighted to be involved in a small way at its inception. It sets a benchmark which needs to be regularly tested and I would argue that it would now be interesting to see whether there is any correlation between those Trusts that are high-performing in terms of recruitment to clinical trials and the availability and quality of information.
In some senses the specific results – pity the poor hospital receptionist – are less important than the overall impression being given to patients about whether an NHS organisation is open or closed for doing clinical research. I used to work with a CEO who used to say that you can tell the culture of an organisation just by walking through its front doors and gauging what he used to call ‘the smell of the place.’ In essence I think that’s what we are talking about today.
What next? Well, as you will see, the report says that a resource pack will be developed to help NHS Trusts develop their information on research. Whatever we do it is important that it is supportive and encouraging rather than admonishing. Life for our NHS staff is hard enough as it is and we need to keep it simple. I am rapidly coming to the view as I develop my programme on patient access that we need to embed patient champions in every NHS Trust to promote a more conducive culture – a little like embedded reporters in the army. The NIHR CRN CC Involvement4Access project which I have mentioned several times before begins to take us on that road. We also need to really support and help our hospital and GP surgery staff to understand why research is important and why it is important patients should feel comfortable asking about it. It is people who drive culture.
At the UK Dementia Research event last week, I got chatting to Professor Richard Wade-Martins who is Principal Investigator at The Oxford Parkinson’s Disease Centre. This was in the queue for the cloakroom I should add, and following my witterings during the afternoon panel session.
Richard leads a five year programe of research in Parkinson’s disease at the University of Oxford otherwise known as the ‘Monument Discovery Project.‘ It’s funded by the Monument Trust Discovery Award from Parkinson’s UK – the largest single grant ever given by the charity, and is looking at everything from trying to identify new biomarkers for the condition to the development of new patient-specific stem cell models.
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, Leeds (see below). To think I used to spend three weeks every autumn to attend the party conferences. It’s like regaining a bit of my life again.
But before I get into the meat of this blog, I just thought I’d draw your attention to a presentation on the ‘Caldicott2′ website (this is the review looking at information governance in the NHS including use of patient data for research purposes). Made by Dame Fiona Caldicott earlier this month it shares some early findings from the review and also shows the next steps for this important piece of work. Look under the Southern Informatics listing on this page.
I’m off to Leeds tomorrow to speak at an NIHR regional event – the first of four happening over the next few weeks – aimed at strengthening dialogue with NHS Trust R&D Managers against the background of much change in the NHS. I am looking forward to getting to know this audience better and hope that, during my small walk-on part, I can convey the important role they play in delivering research which will lead to better outcomes for patients. I think I am erroneously listed as ‘a patient’ on the programme and am wondering whether that means I take on the even more misleading definite article on the day, and am then definitive in every sense of that word thereafter. Let me worry about that one.
I notice that several organisations have been pushing out their responses to the NHS Commissioning Board Draft Mandate (it being the deadline). The King’s Fund document is compelling as ever although, as always after reading their documents, I felt a bit as if I should have taken that further degree after all. It has a strong statement on ‘shared decision-making’ which succinctly conveys what this should be in practice.
The Association of Medical Research Charities (AMRC) has joined forces with other research funders to put in a very comprehensive response focusing on the research and innovation objectives in the Mandate. Some good ideas in there including the point about better training for NHS staff on research, a point that was also made by Jonathan Sheffield (NIHR Clinical Research Networks) during The Guardian debate on innovation this week. It’s certainly true that if patients are to see choice become a reality in research we need to do much more to make sure that NHS staff are ‘research-aware.’ Meanwhile I thought Cancer Research UK’s response was helpful about ‘patient choice’ saying (briefly) what needs to happen to make it work and what they might be able to contribute. I think this is the key – organisations understanding that in this new environment what is pushed from the outside is going to be as, if not more, important, than what is put out from the centre. And I sometimes wonder whether the sense of shared responsibility has quite sunk in in some quarters.
Tangentally you might want to check out the blog I have written about patients and Academic Health Science Networks (AHSNs) for the Greater Manchester (AHSN) website. Last week at the INVOLVE annual symposium for members it was interesting to hear people talk about their different experiences of working with AHSNs. Helping support their work in trying to avoid groundhog day in these new organisations, is going to be a focus for the future I suspect.
This afternoon I tweeted about the national portal for people with dementia and their carers to register their interest in taking part in research and be informed about future trials. It is being developed by DeNDRoN and will be developed shortly. This really could be the most significant development in helping to nurture a research-active patient community since the Alzheimer’s Society set up QRD in the 90s. The opportunity of the PM’s Dementia Challenge to give it the best start in life should not be missed and I’m looking forward to chairing the public involvement group that is going to help guide the portal’s development.
Seem to be on the road a lot from next week as well and look forward to meeting people in Birmingham at the next NIHR Regional R&D Day, the Mental Health Research Network (MHRN) conference and other places. Reminds me I must buy Ben Goldacre’s new book to read on my travels. And this from the US Federal Drugs Administration today seemed relevant.
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 care settings for the benefit of patients.
For those interested in this aspect of public involvement you might be interested in two initiatives under ‘I4I’s’ auspices that are aimed at addressing areas of unmet clinical need and where innovations in treatments and technologies have the potential to make a high impact by both reducing morbidity/improving quality of life for a large population of patients, and improving the effectiveness of the health and care services supporting them.
The two pilots have been funded up to £250K a year for five years by NIHR and the Technology Strategy Board with support from the Engineering and Physical Sciences Research Council and the Medical Research Council.
More information is available form the pilots’ respective websites but a good colleague from NIHR sent me these potted descriptions that I thought I would cut and paste here:
Enteric – the Bowel Function HTC – is piloting innovative ways in which to bring together patients, carers, doctors, scientists and industry to develop new technologies, treatments and devices in the field of bowel disorders .
Devices for Dignity HTC has been set up to drive forward innovative new products, processes and services to help people with debilitating conditions deal with their daily challenges. D4D works with inventors, clinical and healthcare staff, industry, academics and patients and has the ability to take ideas from concept through to commercialisation, aiming to do this as rapidly as possible. Their current focus is on assistive technology, urinary continence management and renal technology.
In the last few weeks I’ve had a bit more time to look at a few publications that have been on my reading list.
Again, with the subject of public involvement in the innovation pipeline very much front-of-mind, my head was turned by this report last month from the EU Science in Society programme about ‘Responsible Research and Innovation.’ The main thrust of this concept is how we ensure research is conducted that is of social benefit. There is a welcome and long section in this report on the importance of public involvement and a refreshing critique of the poor performance of many research funders in this regard.
You might also want to read Jack Stilgoe’s piece this week on the RSC website about the inability of Government to now fund and direct the science we need as opposed to the science we want. Not sure I agree with the implicit suggestion from Jack that Government needs to directly hold some reins/funds although I certainly agree with his concerns about how the current funding system does not necessarily address the key societal issues that worry us all. One of the reasons for my lack of confidence in the former is how – outside health research – Government has often failed to engage and involve the public to the degree it should.
Jack also has a rather good blog of his own which you should make time to visit.