Engagé: Performing engagement in health and wellbeing research: Towards a new code of ethics

To improve our health and quality of life we sometimes need expertise that is built up by extracting information from people such as patients and other NHS users, but other times it is important to involving them as collaborators. People's experiences and opinions can make valuable contributions to decisions about what are the most important questions for researchers to ask or how a particular medicine or government policy can be developed. Projects by the Alzheimers Society allowing dementia sufferers and their carers to collaborate in research into how GPs can find alternatives to prescribing ever more powerful medicines has improved their quality of life over the last decade. During the last five years, the involvement of women living with HIV/AIDS in research into the social and medical aspects of the disease that had previously only involved men has greatly improved the quality of testing, treatment and hence the health and wellbeing of hundreds of thousands of women worldwide.

Involving people through collaboration and engagement in the research process needs careful preparation. In particular it raises major new ethical issues with which health researchers often struggle. Existing ethical codes designed for conventional research practice need rethinking to address the need for participants to become collaborators in the whole research process from the fieldworker to the laboratory and from the clinic to the policy-maker's desk.

Research across a range of disciplines relating to health and wellbeing - such as community psychology or epidemiology - has generally undertaken community engagement without systematic consideration of ethical implications. A failure to appreciate the different mindset and strategy needed for a two-way dialogue with participants, as opposed to a one-way process of data gathering by experts, can reduce the effectiveness of engagement.

As in many other areas of research, community engagement has occurred at the margins of academic institutions and within silos based on people's specialist area of knowledge. Barriers such as lack of resources and skills among these specialists have prevented the necessary lessons being learnt, even within a particular disciplines. Learning about community engagement is very rarely shared between disciplines.

Engagé aims to address this by a series of projects:

1. Bringing together the funders, researchers evaluators and, vitally, those on the receiving end of these community engagement projects. At a carefully planned two day residential they will share insights from their experience and draw up a code of ethics for community engagement in health and wellbeing research. We will employ techniques borrowed from the theatre to allow people to communicate with people from completely different backgrounds to their own.

2. Draw up a new code of ethics for engagement in health and wellbeing research via a process of dialogue and collaboration.

3.This will be incorporated into an online Guide to Engagement on Health and Wellbeing e-book and DVD that will equip researchers, people who they engage with, the funders and evaluators of community engagement projects with the tools to collaborate in the design of ethically sound engagement processes.

4. We will launch this at two UK events in the autumn of 2012 and one international conference in 2013 that will bring together key leaders of research programmes and other decision-makers relating to health and wellbeing.

In the short term (one year) the Guide to Engagement on Health and Wellbeing e-book and DVD will influence and inform practitioners and professional practice through project partners and engagements with national organisations, including the National Institute for Health Research, Involve (the NHS's advisor on public involvement in research) and the Joseph Rowntree Foundation. It will also assist grassroots health and wellbeing groups to form better partnerships with researchers, including Newham LINK, Northern Initiative on Women and Eating and Liver North.

These initial project partners will act as multipliers through the wider network of funders, researchers, community-based practitioners, mentors and evaluators.This will ensure a medium and long term impact (two to five years) for the code of ethics we develop via the new understandings of ethics and assessments made by the partner organisations.