Patient groups

Genuine engagement with patient groups can provide valuable insight into a condition, allow discussion of the potential implications of research with those most affected, and build ways to involve them in developing and answering research questions.

Working with patient groups

Awareness and sensitivity in language and approach is an obvious but critical aspect. If you're performing basic research that you'd like to share and/or don't have experience of engaging with patients, finding someone with that experience is a key first step. Others in your group, institution or field with clinical experience may be able to help, whilst contacting a relevant charity or patient group can yield both advice and opportunities to engage.

For clinical research fellows and groups looking to develop their patient and public involvement (PPI) activities, the Association of Medical Research Charities’ ‘Natural Ground’ web pages provide information and links for increasing PPI in the framing, governance and completion of clinical studies.

To find links to charities and patient groups of relevance to your research, visit the member pages of the Association of Medical Research Charities (AMRC), Genetic Alliance UK or the support group section of Patient UK. You can of course also contact us if you require any advice or help.

Training and support

For further support and advice on getting involved with patient groups, please contact us.