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Today sees the annual Cancer Patient Experience Survey published.
For the third year running it looks at the extent to which people with cancer are being told about the opportunity to take part in research. Also, how many take up that opportunity. National data is published and then statistics are provided by NHS Trust and tumour type.
The results are not that encouraging. Since the survey started including questions about research, the dial has been stuck at less than 1 in 3 people having that possibly life-saving conversation with their doctor. If anything there is a slight trend downwards In 2012 it was 33%, inn 2013 it was 32% and 2014, 31% (see pages 61 onwards of the report). If you have brain or haematological cancer the figure is 37%. If you have skin or urological cancer it’s 17% and 14% respectively.
I am sure some people would say the drift downward is a statistically insignificant drop. But consider this.
For arguments sake, say cancer research is a business. And say patients with cancer are its customers. Then in business terminology we would be informing the stock market that sales are flat, the growth forecast is poor, and there may be a case for issuing a profits warning. And we all know what has happened to even our biggest companies like Tesco when this happens.
What are the causes for this lack of ‘growth’ in the numbers of people with cancer being offered the opportunity to be part of a clinical trial? Why is this happening in a clinical area which had had the longest run-up at promoting research to patients?
I don’t know for sure, is the answer. But I hope that it is an agenda item at the next board meeting of the National Cancer Research Institute (NCRI). Finding out why and putting in measures for improvement will be important.
Arguably, for instance, the cancer patient experience survey should be one of its performance measures. Personally I would like to see us aim for results nearer 50% and 80% by 2016 and 2019 respectively. Arbitrary perhaps but we need to be aiming for something.
I do have an opinion as to what’s not happening. It may be wrong. Nor is it likely to be the whole picture. But it’s based on conversations with public involvement colleagues in cancer and others around the country over recent months.
I think our consumer groups in cancer are not being listened to as much as they should be. I think ‘change’ may be drawing them away from the business at hand. I think that they are not being given the funding and support necessary to be what they can be – an important part of the ‘sales force’ that delivers on the NHS Constitution pledge that every patient has a right to information about research. Finally, I think we are failing to engage their colleagues in the NHS workforce sufficiently in this agenda. But that goes for all conditions.
If I were invited to that next NCRI Board Meeting I would be encouraging them to look at NIHR’s strategic framework for increasing participation in research ‘Promoting a research active nation.’ It doesn’t hold all the answers. However, I would be suggesting they look at how to translate its clear and considered approach – from the research ambassadors programme to the ‘OK to ask’ campaign – to cancer. And then to back it strongly.
There are some reasons to be optimistic. The members of the NCRI Consumer Liaison Group are a formidable force and well-led. Our cancer researchers and clinicians are committed. Cancer Research UK now has a public engagement strategy, budget and team in place and will be putting more weight behind this agenda in the next 12 months. Let’s hope other cancer charities follow suit.
For this results is not good enough for people with cancer and their families.
On New Year’s Eve I took my family up ‘The Shard,’ London’s newest and tallest landmark. As we looked Eastwards a squall was readying itself over the North Downs; the latest in a succession of storms to batter our shores over the past few weeks. Low-flying clouds threatened to swallow us whole. The wind roared around the open viewing platform.
In the run up to New Year’s Day, some of our media and politicians concocted a storm of sorts about the opening up of our borders to Romanians and Bulgarians. For a so-called tolerant country we certainly know how to serve up vindictiveness and prejudice on a repulsive scale don’t we?
Fact is we probably have more to fear from the Chief Executives of Swiss-based pharmaceutical companies. For they seem all too ready to serve up damaging judgements on the UK’s health system. Earlier in 2013 I had cause to write about those chocolate teapot moralists from Novartis . They had felt it necessary to call an emergency meeting in London to admonish us about how the state of clinical research here (I hope they got my Xmas card with its personal message about the UK achieving ‘first global patient into trial’ in 23 commercial studies during 2013).
Then, over the holidays, the CEO of Roche Severin Schwan decided to fall back on tales told to him by a few mates who have lived in other countries as evidence for telling The Times (paywall) that the UK doesn’t value life. Perhaps they were just happier because they could buy it? I’m afraid the rest of the interview – and a broader contextual piece about pharma in The Economist in which Schwan also features - just goes to prove that Mr Schwan and his colleagues know ‘the price of everything and the value of nothing’ as my mother would put it.
Last year, the pharmaceutical industry was buffeted by the successful #AllTrials campaign calling for all clinical trial results to be published and to be made available. The focus and intent of the campaign was strongly endorsed by the House of Commons Science and Technology Select Committee. Industry execs probably thought they were through the worst of it with the deal hatched in Brussels just before Christmas over the new EU Clinical Trials Regulation.
How wrong they were. Today’s report by the House of Commons Public Accounts Committee just shows it was the eye of the storm. There will be no let-up in this drive for greater openness and transparency until practices change for the good and for good. And we are a long way from it happening just yet.
With a £12 billion profit to hand surely even Mr Schwan and his top execs can afford to see that there is an ethical and moral bottom line in play here?
A Very Happy New Year by the way.
UK Clinical Trials Gateway (UKCTG) now shows open trials by location in early Xmas stocking filler for patients
I once wrote an article for a local rag bemoaning the state of the town’s railway station. When, two days later, the council announced plans for its complete redevelopment I expressed my shame and guilt to a friend for not having known this.
“Simon,” he said after a long pause, “it sounds like a simple case of the power of the press.”
In a similar spirit I can tell you that, on Monday, I chaired the first meeting of the new UK Clinical Trials Gateway (UKCTG) Project Board. Then, overnight yesterday, UKCTG underwent a face-lift!
The ‘Gateway’ is the website and downloadable ‘app’ that the UK Government launched as part of its Life Sciences Strategy in November 2011 to help patients and carers access easy-to-use information about clinical trials. In January this year NIHR published a report of public feedback on the site showing that 88% of people would recommend it to a friend. They also identified a number of important improvements they would like to see including being able to find out about trials recruiting in their local area.
From today that’s possible.
You can now search by condition on the ‘Gateway’ and it will provide you a list of clinical trials and their location(s) together with an easily navigable ‘Google Map’ so that you can see what is close to you where you live. You can also filter your search results so it shows only those clinical trials that are recruiting participants (as opposed to all relevant trials including those that have closed). And the site has generally been cleaned-up so it has a simpler home page and information is presented more clearly.
The same changes will appear on the mobile/tablet ‘app’ version in January I suspect.
Because the Gateway pulls data from a variety of different databases where trials are registered – and the information provided at registration by researchers is not always accurate or comprehensive – what you can access via the Gateway is not full-proof by any stretch of the imagination. So, for instance, it might be that not all the sites (usually hospitals) recruiting for a trial will be shown. Best thing to do if you have got a question which isn’t answered on the UKCTG site is to contact one of the sites listed for the trial you are interested in and talk to your doctor of course.
People will also rightly point out that there are other sites which provide similar ‘local’ information. But I am reminded of the response of the heavy rock musician who was being goaded by a journalist to slag off a boy band: ‘There’s room for everyone,’ he said.
Fact is it’s a start, even if the starting point feels like we are doing the never-ending and proverbial paint job on the Forth Bridge by beginning in the middle rather than at one end of the structure.
Anyway, feels good to be able to finish the year with the ‘Gateway’ having responded to a priority clearly expressed by patients and the public as well as researchers. I am looking forward to the Board supporting more improvements and setting a clear vision for the Gateway over the course of 2014.
It’s going to be a ‘big-ish’ month in the EU for clinical trials.
By most accounts, EU legislators will reach a compromise agreement on the proposed new Clinical Trials Regulation in time for Christmas. The key focus for industry bodies is around making sure the legislation embraces aggressive timelines for the approval of clinical trials.
Remind me, isn’t there a well-known saying about ‘haste’ and ‘speed?’
Anyway, I am afraid industry interests dominate the corridors and bars of Brussels and most of the self-proclaimed ‘patient-groups’ lobbying on this legislation bought into the corporatisation of clinical research long ago. So, what we have had is lots of industry positioning coolly argued as meeting ‘patient need,’ but very little acknowledgement of patient rights.
Last week the industry-backed European Federation for Good Clinical Practice (EFGCP) sent out their report of the ‘Multi-Stakeholder Roundtable Meeting on Sharing Clinical Trial Data in the Interest of Patients and Research’ which they hosted in October. I was struck by this quote from the report:
“One – perhaps unexpected – outcome was a focus on the participants in clinical trials. “We have to do a lot more to get back to individual patients involved in clinical trials,” said Ingrid Klingmann (EFGCP). “We owe that to patients for their willingness to contribute to the trial. At present that concept is not embedded in the proposed Regulation – but as a fundamental right it should be.”
Perhaps it was unexpected because there hasn’t been any meaningful dialogue with patients about what they want from clinical trials. And I don’t just mean about the outcome of such research, but how people would like these studies to be conducted.
Question is….have EFGCP and others listened to the patient voice? And, if they have, whether we can expect them to urge for the legislation to embrace the right of people to receive the results of trials they have been part of and for all studies to involve patients and the public to be involved in their design.
Must go. Haven’t quite finished my letter to Santa.
@RBandH Guest blog: Promoting Clinical Research Locally – From ‘OK to Ask’ to Research Changed my Life
Promoting Clinical Research Activities and Opportunities Locally – From OK to Ask to Research Changed my Life
Mark Terry, Research Office, Royal Brompton & Harefield NHS Foundation Trust (firstname.lastname@example.org)
2013 has been notable for the strong momentum provided by National Institute for Health Research (NIHR) to NHS Trusts in our efforts to raise awareness of research activities to the public, and to promote research opportunities to patients. At Royal Brompton & Harefield NHS Foundation Trust (RB&HFT) we have utilised this national focus on awareness and engagement, to actively promote patient/public involvement in the design of high quality research but also engagement with our research portfolio and wider opportunities available.
RB&HFT is a leading specialist centre for heart and lung research, with an international reputation for cutting-edge research and an identity which positions clinical research as integral to the core mission of the Trust. It should have come as a surprise that, following a local replication of the NIHR mystery shopper exercise , we faired only marginally better than the (very poor) national average for the availability of useful research information. However, prior to these results, it was recognised that we could do much more, and as a result of the NIHR spotlight, a Research Awareness Working Group (RAWG) was established to deliver an initial set of priority actions, followed by the development of sustainable, long-terms plans to ensure that patients/public are empowered with greater access to improved research information. As the group was getting going, NIHR launched the “OK to ask about clinical research” campaign, which focussed our attention upon ensuring that, should a patient or a member of the public feel empowered to ask, they would receive a structured, positive response every single time.
As such, RAWG identified that patient/public facing promotional materials would be required, and should be placed in high visibility areas of the hospital buildings, a staff training needs analysis would be needed to identify which staff groups (clinical and non-clinical) patients and the public pose questions about research to, and a wholesale revamp of the research pages on the corporate website and staff intranet would be needed to act as a current, accessible information source.
We have now implemented an initial action plan and are confident that patients/public will now be able to easily access useful information. Posters with the tagline “today’s research is tomorrow’s care” are present across the hospital buildings promoting our revised webpages and email and telephone contact details of who to discuss research activities and opportunities with, in addition to NIHR leaflets being available in all outpatients waiting rooms, reception areas and PALS. A research sign posting guide was also developed for staff use, outlining the top five places to whom an enquirer should be directed to for more information. This has been used as the basis for short training sessions with outpatient staff, receptionists, PALS officers and switchboard operators. It has also been printed and attached to all staff payslips to ensure blanket coverage, and inserted into Trust corporate inductions packs for new starters. The Research Nurse Forum members have been enlisted to further encourage use of the guide on the wards, and the junior doctor handbook amended to include the guide and emphasise the importance of research and the rights of patients to be given information about research opportunities available to them.
The crowning jewel of these efforts is the revised web pages, which direct visitors according to their needs (patients/public, researchers, and life science industry representatives). These pages contain a vast amount of information in a user-friendly and easily navigated format. All research studies currently open to recruitment are listed along with brief details and contact information. Increased appropriate participation in our research portfolio may result from these listings, but primarily this resource is acting as a unique and vital source of information for patients/public, and staff alike. Internally, a desk-top icon has been placed on every Trust computer (advertised through a research screensaver and email blast out) to enable staff to quickly identify whether the Trust does indeed have research opportunities that are potentially relevant to a particular patient.
We have now wound RAWG down, in favour of a new Research Information Group (RIG), aiming to capitalise on work already undertaken and to co-ordinate ongoing support to promote and raise awareness of research in the long-term. We aim to achieve this through regular updates of live initiatives, a more pro-active approach to publicising research successes and achievements as well as the development of benchmarks additional to the repeat of the local mystery shopper exercise to enable us to measure the impact of these initiatives. Which links in nicely with the new NIHR campaign: “Research changed my life”
So here’s something to make your crumpet and jam just a bit more palatable on Sunday afternoon…Thanks to NIR CRN.
This week Health Sector TV will be broadcasting a programme entitled ‘Clinical Research: Making Patients
and the NHS Better.’
The blurb says that this is ‘an important new documentary highlighting how the Clinical Research Network (as part of the National Institute for Health Research) provides the infrastructure that allows high-quality clinical research to take place in the NHS, so that patients can benefit from new and better treatments, and we can learn how to improve NHS healthcare for the future.’
You can view the programme via Health Sector TV on Sky Channel 212 and Freesat Channel 401 on Sunday 20 October at 5.30pm and then it is repeated on Monday 21 October (5.30pm) and Saturday 26 October (12pm). But you can view it now here!
As ever, the patients steal the show and my thanks to interviewees: Carole Bennett and Katrina Randle. Also interviewed are:
- Dr Jonathan Sheffield, CEO, NIHR Clinical Research Network
- Lydia Christopher, Director for Industry, NIHR Clinical Research Network
- James Calderwood, Research Nurse
I believe you will also be able to view the film online at Health Sector The film is also be available for healthcare professionals to view online for 12 months at anytime via Health Sector TV.
Building ‘research active’ communities for a healthier population: a clear mission for CLAHRCs, AHSNs, LCRNs
I am in Alberta, Canada. I have been invited over to share the UK’s experiences in developing public involvement in research. As ever, it is the similarities and not the differences between our two experiences that strike you on a visit like this. More about those another time.
My good friend, Derek Stewart, yesterday wrote an excellent blog with his thoughts on what we are trying to achieve through public involvement. He is right. Public involvement, participation, engagement, these are all a means to an end.
I wonder whether our real aspiration should be the development of ‘research active’ communities that lead to a healthier population. On the 50 minute plane trip from Edmonton to Calgary yesterday I tried to draw/visualise what would define that ‘research active’ community with ‘healthier populations’ in the centre circle:
Well, it is a rough sketch and I’m no Tony Hart. This is what was flying by the window by the way:
I very much believe that by community we could just as well be talking about an organisation as a neighbourhood or a patient population. The term embraces all its citizens as well whether they be patients, carers, the public, researchers, clinicians, etc. etc. Anyway, in a ‘research active’ community the following features would seem to me to be in the ascendant (this is what I wrote in the smaller, outer circles):
- Research is visible to its members
- Research priorities are defined collectively
- Citizens help shape research design
- There is learning through the communities’ experience of health and wellbeing
- Citizens have clear opportunities to participate in research and are encouraged to do so
- Research is central to the provision of health and social care
- Its members are working in an equal and respectful partnership
- Citizens can access and use research evidence as part of their care and treatment
- Citizens share in the governance of research
Alberta is going through a process of rapid restructuring and re-organisation of research across the province. It is not dissimilar to what is happening across the 15 local geographies in England where we are seeing Academic Health Science Networks (AHSNs), Collaborations for Applied Health and Research and Care (CLAHRCs), and Local Clinical Research Networks (LCRNS) occupy the same patch.
Their collective mission is to work with their local NHS and other partners to build research and innovation into the way we deliver health and social care of patient benefit. So, what happens between these new organisations will be more important than what happens within them. Partnership, integration, connectivity will be the name of the game.
Similarly for public involvement a process of re-purposing within these areas must happen in my view. We still have much to do to ensure public involvement is improved in research prioritisation, design and delivery. But we must not become too introvert. It will be important that we look out of our windows, work with patients, the public and our public involvement colleagues across the way, and build the connections that will grow communities that are active in research and healthier for it.
Take part in a live trial now as part of NIHR’s visit to the British Science Festival #NIHRCOMETtrial
I hope you’ll forgive the fact that what follows is the news release but I am part of the team presenting with Jonathan Sheffield at next week’s British Science Festival and I really couldn’t put it better than this. The ‘live trial’ is very exciting indeed and the first dip in the water for a concept that we have been bouncing around for some time which I loosely call either ‘Trialwatch’ or ‘TrialInADay’ – using media and new technology to encourage mass participation in studies to answer serious research questions…….
National Institute for Health Research to make debut at British Science Festival with live trial
This September will see the National Institute for Health Research (NIHR)’s debut show at the British Science Festival and the organisation’s first ever live trial.
The British Science Festival is an annual celebration of science, engineering and technology, with over 250 events, activities, exhibitions and trips taking place over six days from Saturday 7 September to Thursday 12 September. The festival, which is hosted by Newcastle this year, will make a big ‘noise’ for science, technology and engineering regionally, nationally and beyond.
This year’s theme is ‘Making Waves’ and is focusing on discoveries, inventions and research that have made an impact on our lives, and more importantly, what will make an impact in future.
The NIHR’s show called “From bench to bedside: how clinical research is making waves in patient care” will take place on Thursday 12 September from 4-5:30pm at Northern Stage, Stage 2 in Newcastle. The show, hosted by Chief Executive of the NIHR Clinical Research Network Jonathan Sheffield, will include the unique opportunity to take part in a piece of live research called The COMET trial which tests reaction speed.
The event is an interactive and fun show aimed at the general public. Alongside the live trial it also includes audience interaction and a piece of original theatre. The event is free to attend and people can book their place online.
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…
Or should that be silly pharma…I don’t know.
Yes, our colleagues from pharma have stolen the march on everyone else and got the silly season off to a grand old start.
I am referring, of course, to the leaked memo from the European and American pharma trade associations dutifully covered by Ian Semple at The Guardian on Monday. The memo lays out a strategy for heading off the campaign for greater transparency in clinical trials data (as successfully spearheaded by AllTrials) which includes getting patient groups to front the pharma counter-offensive. Article here: http://m.guardian.co.uk/business/2013/jul/21/big-pharma-secret-drugs-trials
You know there are all sorts of things that occur to me when I read these sorts of reports. In no particular order:
- It reads like the sort of technically brilliant but politically stupid thing I might have written as a lobbyist (yes, sadly, I was one of those) twenty years ago.
- I seem to remember that the MP who I worked for even longer ago than that, refused to take any call or read any letter written by someone fronting-up a campaign or cause on behalf of another. ‘If they can’t speak to me direct then…’ he would say. Perhaps if more legislators took that line today we would see a rapid change in the practices of our lobbying industry – way beyond that which a register or legislation is likely to achieve.
- Back to pharma and patient groups. Some of the latter such as the National Voices umbrella group of charities and voluntary organisations have been quick off the mark to condemn the memo and its implication that they can be bought. Others have been less so. I hope those in the latter camp do come out soon and distance themselves. Yet I fear some patient groups are simply becoming more conservative by the day and, at this very moment in time, are spinning round in a quandry as to what they should do, evaluating all the possible things that could go wrong for them depending on their decision. A bit like ‘Scoop’ in ‘Bob the Builder.’ What’s that about moral compass I hear you say?
- I didn’t used to think this but I can feel myself moving to a position where I believe there should be a ban on charities receiving pharma funding. Failing thatimum, they should be legally required to declare all monies received and the purpose. Otherwise some day a charity – and form suggests it’s likely to be the good but misguided rather than the rampantly criminal – is going to come a real cropper.
- The best thing that the UK’s own pharma trade association, the ABPI, could do is openly say the memo is not something it subscribes too. Or somehow let it be known that its silence is a signal of utter disdain.
- It is ironic that a sector which has pilloried the European Union for the last ten years for making research harder to do, should suddenly find solace in its tendency for delay and obfuscation.
But the really, really silly thing is that anyone could seriously take a position that transparency is bad for research and bad for patients.
As I update this in the evening it is only right and proper to point out that the associations referred to in this blog – EFPIA and PhRMA – have today issued their proposed principles for Clinical Trial Data Sharing. Lots of coded language in there I think you will find….
You didn’t think I’d forget NIHR Friday did you?
So the National Institute for Health Research Clinical Research Networks Co-ordinating Centre (NIHR CRN CC), together with The Guardian online, has this week published its annual performance tables for research activity in each NHS Trust in England for 2012/13.
You can find the figures for your local NHS Trust here. For each Trust data is provided on the number of clinical research studies recruiting during the year, along with the overall number of patients recruited into all studies. Comparative figures are provided for 2011/12 so you can see whether activity has increased or not where you live.
Overall the news is very good indeed. More than 630,000 people were recruited into clinical research studies. That’s a 7% increase on the year before. During the year NIHR CRN supported more than 4,200 studies and that’s a 12% increase on 2011/12. There are some nice, simple summary reports available through the NIHR CRN CC website here (look for the pdfs at the end of the page).
A good year then. But it can get better. Hence the importance of the ‘Ok to ask’ International Clinical Trials Day (ICTD) campaign this year.
This week I was fortunate to see the early feedback and results from the campaign (in fact some of them are in my Leeds presentation which I posted yesterday). There is much to celebrate. You can be sure we will be continuing with the theme and perhaps we need to join-up the performance stats and the ‘Ok to ask’ activity in some way? How about a ‘Rapid Reaction Ok to Ask’ taskforce to focus on the areas where we need to do most work?
Have a good weekend.
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.
This evening I have been reading a fascinating report about women with ovarian cancer and their access to clinical trials.
Last week, Target Ovarian Cancer published the results of their 2012 Pathfinder Study. It is an excellent piece of work. What I like about it is that it digs around issues to do with choice and access; both from a woman’s perspective and that of a clinician. It’s not just about whether they want to take part in a trial or not. Thank goodness.
So, yes, we learn that 9 out of 10 women would go on a clinical trial if asked. But, interestingly, only 3 out of 10 have been asked to take part in one compared to 4 out of 10 when the Pathfinder Study was last published in 2009. Two thirds of those women who were offered the chance to take part in a trial did so, compared to just over half three years ago; a sign of increasing willingness among patients to take part in research.
We also learn that many would be happy to go to another hospital to take part in a trial and that most felt they received the right information to help them make a decision about taking part.
I am not surprised that personal motivation and altruism feature above possible treatment benefits in people’s reasons for taking part. Nor that some women were put off by the possible extra strain on their lives. However, I wonder if this might be a good focus for researchers to consider in terms of whether the design and methodology works in the interests of people’s participation – something that obviously public involvement can help with.
The story from the clinicians who were surveyed is that most seem to work in centres where clinical trials happen and the majority are involved in some way. However, there is a general view that bureaucracy (45%), lack of time to recruit patients (38%) and a lack of trials (35%) is hindering progress. Look further behind these results and there seems to be a strong, overall message around capability and capacity (the need for more research nurses, administrators) but perhaps a hint that people are not switching onto existing sources of help. For instance, about a quarter say it is not easy to keep up-to-date with trials but only 9% are aware of Target’s ovarian cancer trial database.
Here’s what I hope having read the study:
- The study gives some really valuable insights into a range of choice and access issues so I hope that Target is now going to work with clinicians and others to think about how these can be improved.
- The Government recently launched local pilots of the ovarian cancer ‘Be Clear on Cancer’ awareness campaign. Since the study found that women in the late stages of ovarian cancer are more likely to be offered the chance to take part in a trial, I wonder if some thought needs to be given to how to make women aware of clinical trials much sooner after diagnosis?
When you read studies such as this you can’t help but ask: where are the others? If many charities were to do the same, we would be better able to build up an overall picture on choice and access, not to mention more condition-specific information. And this, in turn, would help us change clinical practice so that more people had the chance to take part in research.
On the other hand you could continue to award thousands of pounds to researchers to keep hammering away at that molecule for a further three years. Your choice. I’m just not convinced it’s always the right choice for patients.
This is already doing the rounds on twitter but I thought I would share the email/letter that I have sent out to those who took part in the survey….
I am pleased to let you know that the results of the UK Clinical Trials Gateway (UKCTG) Patient and Public Survey conducted last summer have been published today by the National Institute for Health Research (NIHR). You can read the full report on the NIHR home page here:http://www.nihr.ac.uk/Pages/default.aspx .
Over 600 people took part in the on-line survey and it is clear from their response that UKCTG is seen as a welcome and important initiative. The challenge is to ensure that UKCTG meets its full potential from a patient perspective in the coming months and years. The main findings from the survey are as follows:
• 83% of respondents identified themselves as a patient or carer.
• 80% had not heard of the UK Clinical Trials Gateway (UKCTG) before receiving the survey.
• Only 28% had taken part in a clinical trial.
• 38% said they knew little or nothing about clinical trials and would like a clear and
reliable source of information to learn more; 56% said it would help them or someone
they care for explore opportunities to take part in a clinical trial now or in the future.
• 64% said they would like to find out about trials recruiting in their local area.
• 66% said they found UKCTG ‘easy’ or ‘very easy’ to find their way around the site, 28% rated it as only ‘satisfactory’.
• 67% said they found the information provided on the site ‘very clear’ or ‘fairly clear’. • 72% said that UKCTG should help them make direct contact with a clinical trial without going through their doctor.
• 88% of patients said the site should provide people with relevant links to patient
groups, medical researchers and funders, which are relevant to a clinical trial study. • 88% said they would recommend the site to others.
The report of the survey includes recommendations to UKCTG on how it should be developed to better reflect the priorities of people interested in finding out about, and taking part in, clinical trials. Recommendations are made in the following areas: Vision and Strategy; Awareness and Promotion; Facilitation and Recruitment; Content and Ease-of-use; Access and Marketing and; Public Involvement/User Panel. In my introduction to these I talk about the need for UKCTG to adopt an operating philosophy which is much closer to the growing appetite and expectations of patients when it comes to research:
“Inherent in the survey findings is a challenge to the UKCTG to align itself ever more closely with the priorities and needs of patients looking for research opportunities. At the core of this is a desire to see the UKCTG evolve its current model as a simple ‘information provider’ to that of a more interactive patient partner, which helps supports their choice to participate in a trial or not.”
This opens up many exciting possibilities and I am looking forward to working with you in supporting UKCTG to develop a a bold vision and direction for the future. A key element in this process will be the new ‘User Panel’ and your thoughts on the most effective way to establish this which captures and maintains people’s enthusiasm are most welcome. In the meantime I would urge you to continue to promote the site and the downloadable ‘app’ through your networks and in your conversations with patients, members of the public and research colleagues.
My thanks again for taking part in the survey. I shall be writing again in due course to those of you who expressed an interest in joining the UKCTG User Panel.
….more on this tomorrow.