Excuse my laziness but it is Saturday. Here’s a copy of a press release put out by the a Health Research Authority (HRA) on Wednesday about a call (in essence, a survey) they are doing for good practice in identifying potential participants for research studies. The results of the work will be published by HRA in due course.
What it will mean for patients and the public?
Well, I’ll get more on this in the coming week but the statements in paragraph four about consistency, transparency and privacy are the key ones. HRA clearly sees improvements in practice as necessary to ‘protect and promote the public interest.’ And you’ll see the regulator is also asking in the survey for practical examples of public engagement in recruiting people to research.
The survey can be found as a link in the text below but you can also go straight to the new release and survey the HRA website here.
Published on 11 December 2013
The HRA is launching a call for evidence to identify good practice in identifying potential participants in health research.
Building on our remit to protect and promote the interests of patients and the public in health research, we are asking for examples in the areas in which we are directly involved as well as broader successful participation initiatives.
The revisions to the NHS Constitution have committed the health service to recognising and promoting the value of research, and the Health and Social Care Act 2012 placed obligations on NHS organisations to support this. The Caldicott 2 Review report and recent Government response agree that more should be done to increase people’s understanding of the benefits of research and to inform them about how to get involved. The NHS Constitution sets an expectation that, as an NHS patient, you can be asked to participate in research.
The HRA recognises that there is considerable variation in perspective and practice about the ways in which patients and the public are offered opportunities to take part in research. We want to explore the potential for providing clarity for the research community by identifying ethical, practical and efficient models for identification of potential participants. In accordance with our remit to protect and promote the interests of patients and the public in health research, such approaches should be transparent, maintain patient and public confidence in research, and protect the privacy of personal medical information. They should also enable appropriate access to information that will give more patients the opportunity to take part in research.
Our request for information on current practice will help us to identify the need for any further guidance and advice for researchers. People can contribute by completing the brief survey and returning it to participant.models@nhs.net by 31 January 2014.
We are interested to hear about the impact of changing recruitment strategies on recruitment and retention rates. We are also particularly keen to hear about examples of patient and public engagement around models of recruitment, and evidence about patient and public expectations relating to the identification of participants.
We will publish the outcome on http://www.hra.nhs.uk to enable the research community to benefit from the best ideas in the NHS.
Simon Denegri's Lay Review 