The NHS Health Research Authority (HRA) consulted on their policy framework between 18 December 2015 and 24 March 2016, which will apply to all health and social care research that falls within the responsibility of any of the four UK Health Departments. The policy framework will unify the current system in which there are four separate Research Governance Frameworks for each UK nation. The policy framework will act as a basis for operational provisions and sets the standard for conducting health and social research in the UK.
Research is essential for the rare and genetic disease community where there is a significant level of unmet health need. It is crucial that patients and patient organisations are involved throughout the whole research pathway. We welcome the new UK policy framework, as it goes some way to ensuring that this happens within the HRA remit. Involving patients, service users and the public can bring great benefit to the research itself, and should be an absolute – rather than the current wording that the document uses: ‘where appropriate’. This creates ambiguity around whether involvement is necessary at all stages of the process.
Patient involvement in research can become a tick box exercise for some researchers. For this reason we have recommended that the HRA expand on what is expected of them when involving patients, service users and the public in their work. The HRA needs to expand on the different ways in which patients can be involved, as well as providing information on the benefits of involving patients in research.
To find out more about the benefits of involving patients in research please see the Patient Partner project, in which Genetic Alliance UK was a participant please view: