UK Clinical Trials Gateway

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: .

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.

We do beat ourselves up on a regular basis in this country.  Sometimes appropriately.  But often the punches fly a little too freely.

Australia have launched a new clinical trials website today to boost patient recruitment.  It has strengths.  But it is not as good as our own UK Clinical Trials Gateway (UKCTG).  For one main reason.  While on UKCTG you can search for the trials that are open with just one click.  Australia points you to a number of sites which you then have to choose from to begin your search.  Which makes it one, two, or possibly three (Skippy) clicks away from being useful.  Seems to also want to meet the needs of all audiences whereas UKCTG is focused on the patient.  And does anyone else think it looks uncannily like ours  in terms of format and style, or is that just me?

If you want to know what’s happening with the UKCTG Patient and Public Survey, I am getting there!  I’m just in the process of re-drafting the report of the results and thinking about the recommendations.  In the meantime, UKCTG is now getting 7000+ hits a month.  Not bad with no real marketing behind it.  I’ve said enough for one day.

Over a half a million members of the British public took part in clinical trials through the NIHR Clinical Trials Research Networks in 2010, a 24% increase on the year before.  Those are the Government’s figures, not mine.

Last week’s ‘life sciences’ announcement included a range of measures to increase patient recruitment to trials.  These include reforms of the rules governing the use of patient data for research purposes as well as other initiatives such as the next phase of development for the UK Clinical Trials Gateway. 

Thus far the hoped for increase in clinical trial participation has been viewed only from the research standpoint but with a glance towards distant outcomes of patient benefit as a raison d’etre.  But we also need to turn our mind to how we provide appropriate help and support to these growing numbers of patients.  It is often said that people on trials receive better care and show better outcomes than if they were not?  The evidence is better for the former than the latter but still not that robust.

Talking to patients will reveal many positives in terms of their experience of being on a trial.  But concerns and issues do arise, such as the lack of follow-up or feedback after a trial ends.  Sometimes things will go wrong; the incident at Northwick Park several years ago being being an example.  Looking back on that report now, it is interesting to note that not one of the recommendations really relates to the patients themselves and the learnings we might take from it.

To whom and how a patient can raise concerns is a difficult one to answer succintly and simply.  To the clinican, the clinical trial nurse, the NHS?  All of the above, most surely but perhaps it is not enough particularly if things go seriously wrong.

There then seems to be a bewildering array of organisations who you could turn to.  Some of these might have an interest in your concern but have no license to act or ability to investigate from a patient perspective.  Those that you would think would be interested – such as the National Patient Safety Agency (NPSA) – will signpost you elsewhere.  Looking to the future the new Health Research Authority (HRA) will have a duty to ‘promote and protect’ the public interest but  it’s capacity and capability to fulfil this, will only reach as far as systems and governance I feel.

I wonder whether there is a case for an independent Health Research Ombudsman to investigate matters when things go wrong from a patient perspective, or whether this should be included as part of the brief of the current Health Ombudsman?  The same rules might apply in that one would have to show that you had exhausted other routes or that the complaint had been handled unsatsifactorily.  But it could be an important route to recourse where currently there seems none.  It would also help to improve the evidence base around the patient experience of clinical trials – the Health Ombudsman’s annual report is often quite influential.

Given that the changes being mutedto make everyone a ‘research patient’ require amendment to the NHS Constitution, now might be an opportune time to consider whether it would be in keeping with this change to have a ‘supreme court’ type body of the sort above to protect people’s rights.  No, to ensure that people are receiving the very best care.



The UK Clinical Trials Gateway has just launched a mobile phone app enabling you to search for information on clinical trials.  You can download it through the Apple Store by typing ‘UK Clinical Trials Gateway’ into the search field.  Otherwise appgrabber has it for download here.  And its free.

Not yet available as a full ipad version I believe but, those of you with ipads will know that you can still run it on your ipad it just doesn’t look so good.

I have yet to download and try it yet so would be interested in what people think of it.

The world has gone consultation mad.  Another two dropped into my inbox yesterday.  I’m seriously considering booking myself into consultation rehab.  A few days off next week will at least allow me to undergo an intensive consultation detox programme in the meantime.  

For those of you who have set aside today to write a response to a consultation paper here’s my top three tips: keep it short; make the questions work for you and; don’t just send your response to the reply box, share it with others!

One of the more interesting consultations to have appeared since the beginning of the year is the Office for Life Sciences’ stock-take of developments in regenerative medicine building on the work of the UK Stem Cell Initiative.  As you may recall, regenerative medicine (stem cell research)  is a key plank of the MRC’s strategy and delivery plan announced at the end of last year.

Interestingly, the term ‘stem cell research and charities’ is one of the phrases that most often brings people to this blog from search engines – I think the term now used widely is ‘trending.’  For good reason given the news it is getting.  And I thought this was reason enough to do a bit of a focus piece today.

Stem cell research is one of the most exciting avenues for research right now and, given its potential, it is no wonder that charities are increasingly involved in, if not at the forefront, of such work.  I guarantee you that in any given week, a Google news search for medical research will result in several headlines about stem cell research and that at least one will have a charity component.

The hot news in the sector this week has been the British Heart Foundation’s ‘Mending Broken Hearts’ campaign to support a £50 million programme of stem cell research.  You can view one of the videos from that campaign by clicking on the video screen to the right – yes, just an added reason to visit this blog again and please do suggest videos for me to include!  But I was also interested that AMRC’s 126th and newest member charity ‘Restore Burn and Wound Research’ has stem cell research at the heart of its research strategy.  I could, of course, have pointed to many other examples of such work being pursued by other charities.

I asked my colleague, Dr Kieran Breen (Research Director, Parkinson’s UK) to say why such research is important and here’s what he said:

‘One approach for the treatment of Parkinson’s is to replace the nerve cells that have died. Stem cells are a promising tool with which to achieve this aim. These cells can be transformed into specialised nerve cells that can then be transplanted into the brain. There are multiple sources of stem cells. They can be obtained from an embryo at a very early stage of development. Alternatively, they can be generated by reprogramming specialised cells such as skin cells. Each source has its advantages and disadvantages so it is vital that we keep all avenues open in our search for an ultimate cure for Parkinson’s.’

We did a rough search on our database here and excluding collaborative ventures, larger programme grants and capital projects (simply to get a sense of the depth rather than breadth of interest in the sectot) we identified 24 charities that funded 104 projects or fellowships involving stem cells amounting to almost £10million. Given that was up until 31st March 2010, I have no doubt we have seen a further expansion in this profile but the AMRC member charities pursuing this line of research in one way or another and who appeared in our search include the following:

Action Medical Research
Alzheimer’s Research UK
Arthritis Research Campaign
Association for International Cancer Research
Ataxia UK
Bardhan Research and Education Trust of Rotherham Limited
Breakthrough Breast Cancer
Breast Cancer Campaign
British Heart Foundation
British Lung Foundation
Cancer Research UK
Diabetes UK
Fight for Sight (British Eye Research Foundation)
Guy’s & St Thomas’ Charity
Juvenile Diabetes Research Foundation (UK)
Kidney Research UK
Multiple Sclerosis Society
Parkinson’s Disease Society
Royal College of Surgeons of England
Royal National Institute for the Deaf (RNID)
Sir Jules Thorn Charitable Trust
Wellcome Trust
Yorkshire Cancer Research

I am sure there are others and apologies in advance to any members who I have missed off the list (happy to miss them). 

I feel that one of the difficulties the general public probably has at the moment is in trying to untangle the flood of news stories on stem cell research and get a sense of those discoveries that are near to application with patients.  A number of AMRC members like the MS Society have pages which list some of the most interesting trials.  You might also try searching on the new (in beta phase)  UK Clinical Trials Gateway being established by the National Institute for Health Research (NIHR).  I did a very simple search this morning and it churned out 16 trials.

The fact that we have a strong and stable environment in the UK including a sound legislative framework is an important reason why UK stem cell research is prospering in this country.  You only have to look at the ensuing stop/start debate in the US to understand why.  It’s a crucial facet of our current environment and we must hold on to it whatever changes there might be in arms-length bodies and regulators.

You might be interested to know that AMRC is currently revising its position statement on stem cell research to bring it up-to-date.  Don’t worry, we are not issuing a consultation paper, but I am always open to suggestion of how to make these things be more meaningful to the media, public and our partners.

And finally, if you’d like to read around the subject a bit more I can highly recommend the website of the UK National Stem Cell Network (UKNSCN) as a starting point.  Also, don’t forget the forthcoming public engagement events on stem cell research that AMRC is doing with UKNSCN, in London on 7th March and York on 29th March.  I encourage you to root around some of our member sites as well – for instance the MND Association’s research blog – where they will often post regular updates on what is happening.

I’m off to tear up a consultation paper….