Diverse and inclusive involvement
Involving groups whose voice is seldom-heard or under-represented is likely to require extra thought, preparation, time and money. This page highlights some practical considerations
When undertaking consumer an community involvement, it can be tempting to involve the same people - usually those that are well known to you or your organisation. Wherever possible, try to involve people with a diverse range of skills and experiential knowledge.
Those most affected by health inequalities often have the least opportunity to inform and shape health research.
Diverse involvement ideally reflects the differences amongst groups that are relevant to your research (Beresford et al. 2017). For some groups, researchers and researcher organisations should offer support to increase consumer and community capacity to be involved.
Groups that are less likely to become involved (e.g. ethnic minorities, young and working age people, older people, disabled people, people with learning difficulties, those without a university level education, people from lower socio-economic backgrounds) may be limited by a number of practical barriers. Difficulties with access*, finances and time can be addressed with flexible approaches to involvement. Sometimes, the only way to engage with different groups is to understand them individually and tailor involvement to them accordingly.
* Not only physical access (e.g. for wheelchair users) but also cultural or communication access.
You should not expect all groups to respond to adverts about involvement or to feel comfortable and confident engaging in discussion groups, providing feedback on documents or voicing their opinions in formal settings. Your communication with people needs to be appropriate to their circumstances, e.g. using traditional mail for someone who doesn’t use email or adapting your communication style to accommodate people with learning difficulties, or a hearing, visual or physical disability.
Dr James Sheppard needed consumer involvement from people over 80 so he went to his gran’s day care to get it.
A word on ‘representativeness’
A common question when consumer involvement is conducted is whether these participants ‘represent’ other consumers’ views. Consumer involvement is about gaining an understanding of what it is like to live with a condition. Those you involve contribute by bringing a different perspective rather than necessarily being representative. In other words, consumer involvement should not be confused with research where it is often important to get a representative sample. Insights from researchers can be found on Oxford University’s Healthtalk.org website.
One possible exception is where there is a specific intent for a member of a consumer group to advocate on behalf of their community. In this case, it would be important for that individual is well appraised of their community’s views. Guidance from the Northern Territory: Strong Voices: A Toolkit to strengthen and support consumer representatives provides useful information for consumers that represent communities, including those that are culturally diverse.
The NHMRC guideline: keeping research on track II was developed to provide advice on how the values and principles outlined in Ethical conduct in research with Aboriginal and Torres Strait Islander Peoples and communities: Guidelines for researchers and stakeholders can be put into practice in research.
- Beresford P. User involvement, research and health inequalities: developing new directions. Health Soc Care Community (2007);15:306-12
- Rayment, J et al. Involving seldom‐heard groups in a PPI process to inform the design of a proposed trial on the use of probiotics to prevent preterm birth: a case study. Res Involv Engagem (2017);3:11.
- Kauffman, K et al. Engaging hard-to-reach patients in patient-centered outcomes research. Journal of Comparative Effectiveness Research, (2013); 2(3), 313–324.
- A guide for writing easy read information. People First, Office of Disability Issues, Ministry of Social Development (2014) (NZ)