Perhaps the biggest step was recognising that research participants are just that – participants in research and not ‘subjects’. They could have valuable input not just by taking part but by feeding back on what was important to them, not always what clinicians had anticipated or researchers used as outcome measures. So why not involve patients and the public in the design and even the allocation of funding for research projects? Well that is exactly what is now happening.
The National Institute for Health Research (NIHR) funds an organisation called INVOLVE to support public involvement in NHS, public health and social care research. The work of INVOLVE aims to promote the empowerment of the public to become more involved in all aspects of research. Their website provides information about how to get involved without being a participant in a study. They make linkages between the public, researchers, NIHR and other funders and sponsors; and encourage evaluation of the impact of public involvement in all stages of the research process.
The NIHR encourages participation in research through their “OK to ask about clinical research” campaign. This has had the combined effect of making both patients and busy clinicians think about whether there may be a trial going on that could help make a difference. Amongst INVOLVE’s many resources is a searchable database of research projects in the field of health, public health and social care that have or plan to actively involve members of the public as partners in the research process. NHS Choices also provide information about clinical trials and medical research along with a clinical trial search facility.
By getting patients, carers and the general public involved in all aspects of research, there has to be a better understanding of the issues from all persectives and greater relevance for the research undertaken and end results.