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Call for good practice – participation: consultation

Last updated on 16 Jun 2017

This HRA consultation has closed and is displayed for reference only.

The HRA launched a call for evidence in January 2014 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 asked for examples in the areas in which we are directly involved as well as broader successful participation initiatives.

The revisions to the NHS Constitution 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 agreed 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 wanted 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 helped us to identify the need for any further guidance and advice for researchers. People contributed by completing a brief survey

We were interested to hear about the impact of changing recruitment strategies on recruitment and retention rates. We were 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.

Read a summary of the responses we received

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