Public have their say on 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: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.

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