Older People’s involvement in research: purpose and good practice
Ageing research flourishes when the research community connects with the relevant players from government, voluntary and community sector and older people themselves. As a result many funders of research (and researchers themselves) are recognising the benefits of ‘user’ engagement especially the role of non-academic users. In spite of this, we need to understand to a much greater degree how older people’s involvement in research can be appropriate and meaningful.
Barnes and Taylor (2009) in their report “Involving Older People in Research” outline four broad types of involvement:
• active subjects in the research
• advisors to researchers
• research practitioners working on their own or in collaboration
• direct commissioners of research to use it in campaigning work.
In addition they outline six key reasons for the involvement of older people in research:
1. Produce research that is considered relevant and important by older people.
2. Understand what ageing means to older people.
3. Ensure that research has a bigger impact.
4. Develop skills among older people.
5. Challenge ageist assumptions.
6. Generate data for a campaigning resource by older people.
The ethical and practical considerations of actively involving older people in research are central. The principle of informed consent must govern all research with the normal conventions, respect, privacy and confidentiality (CARDI 2009). The range of practical issues includes:
• Planning, connecting and communicating;
• ‘Representativeness’ of those people who become involved;
• Training and support;
• Building effective relationships (Barnes and Taylor -2009).
Working in Dublin to identify ways of improving the delivery of social services to older people using participatory techniques, Doyle (2009) reflected that the moral case for involvement must connect with the practicalities and realities of involvement, for example how much or what type of involvement do older people actually want?
Whilst recognising the aforementioned considerations, researchers should not avoid ethical or practical challenges by taking the option of ‘safe’ research that excludes hard-to-reach or vulnerable groups.
We need to understand the wishes and needs of the diversity of older people, especially those which are vulnerable or excluded.
Barnes and Taylor (2009) Involving Older People in Research - examples, purposes and good practice. ERA- Age Sheffield.
Brown, et al (2006) Evaluation of Consumer Research Panels in cancer research networks.
National Cancer Research Network and Macmillan Cancer Support
Doyle (2009) Safeguarding against the tokenistic involvement of older people in the participatory research process. 4th Living Knowledge Conference Presentation.www.cardi.ie
CARDI (2009) Ethical Guidelines for Research Projects – www.cardi.ie
Walker (2007) Why involve older people in research? Age and Ageing; 36: 481–483