An online public survey has found that people want more information that is easier to access on clinical trials. The survey was asking for opinions on the UK Clinical Trials Gateway – a website to help the public find out about clinical trials they may be eligible for. 66% of respondents found the system ‘easy’ or ‘very easy’ to navigate, and 67% found the information ‘very clear’ or ‘fairly clear’. But there were lots of areas for improvement – a better consistency in quality of the “plain English” information and more links to sources of further information for example. Only 20% of respondents had heard of the Gateway, suggesting that the service’s biggest problem lies with public awareness. The report makes a range of recommendations to improve the service.
The UK Clinical Trials Gateway (UKCTG) website is hosted by the National Institute for Health Research (NIHR). It was announced in the Plan for Growth in March 2011 and has been developed in partnership with medical research charities, research professionals and patient representatives. It is aimed at the public and clinicians and aims to provide easy to understand information about trials and to signpost trials that may be suitable for users or their patients.
The website’s content is being drawn from a variety of sources, including national trial registers that are publicly available. This means that it can include trials that may be run from other countries but which have part of the study taking place in the UK.
How was the survey conducted?
The survey was done through surveymonkey and a link distributed via email to a range of patient groups and networks. It was also posted on a number of websites including the NIHR’s Clinical Research Network, INVOLVE and UKCTG (I think we tweeted about it too!). The survey ran for for the whole of July 2012. 645 people responded, with 83% identifying themselves as a patient or carer. Only 2% were clinicians so the results and recommendations are more applicable to the public user rather than the clinician user experience.
What were the findings?
- 80% had not heard of 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
What were the reports recommendations?
Recommendations to help UKCTG better reflect the priorities of people interested in finding out about, and taking part in, clinical trials were made under the headings: Vision and Strategy; Awareness and Promotion; Facilitation and Recruitment; Content and Ease-of-use; Access and Marketing and; Public Involvement/User Panel.
Vision and strategy - Going forward UKCTG needs a more patient-focused strategy so that it meets their needs as well as the UK research community’s.
Awareness and promotion - the site needs renaming and made easier to find by patients searching for information. It needs better promotion by the NHS, by charities and patient groups, research funders and other organisations.
Facilitation and recruitment – UKCTG should conduct a feasibility study for hosting a register on the site that people (healthy or otherwise) could add themselves to to say that they are interested in taking part in trials. In the meantime the site should include more signposting to other ways of signing up to trials and better search functions to help users find trials near them.
Content and Ease-of-use – All trials listed on the site should have a lay summary and users should be able to rate its usefulness. NIHR grant funding should be withheld if researchers do not provide lay summaries and there needs to be systematic quality-control of the websites content.
Access and marketing – not everyone has easy access to the internet so UKCTG needs to look at how to reach everyone.
Public Involvement/User Panel – a user panel should be involved in the future development of the site, including advising on the best way to implement the above recommendations and to build up a knowledge base of public experience of using UKCTG and taking part in trials, to inform patients and the wider research community.
It’s really important people are able to participate in research - 82% of the public think the NHS should offer opportunities to take part in clinical research, and fewer than 7% say they would never take part. But survey after survey is finding that the public would like more information and opportunities.
NIHR and other research funders, including charities, are working hard to improve this and patient recruitment is on the rise. We’re looking forward to seeing how UKCTG implement the report’s recommendations.