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Research Conference Report: Involving People in Research Symposium, March 3-5, 2008

Leah Lonsdale

The ‘Involving People in Research Symposium’ was held in Perth in March. It was a highly interactive forum for people interested in supporting and promoting representation and community involvement in all major facets of the research process. Half of the conference showcased examples of community/researcher partnerships. The other half of the conference was highly interactive and included discussions about barriers and how to work around/eliminate these barriers.

Delegates included researchers, health professionals, students, community and other representatives from a number of groups.

Benefits of Involving People in Research

Several presentations were given on the benefits of involving people in research. A number of organisations and individuals who had been involved in the research process also spoke about their experience and the framework in which researchers and communities worked together.

Of particular note…

It’s better to have TWO representatives at the table instead of one…they can support each other.
Involving people in research can mean either that people help do the research itself, or are a community representative on a research review panel.
What researchers want to learn about a particular condition does not always match with what people affected by a particular condition want to learn.

People as Partners – Showcase of Good Examples

A Seat at the Table - Breast Cancer Network Aust.

The Breast Cancer Network Australia’s Seat at the Table Program has been most successful. The aim was to get women with breast cancer onto key boards and committees to present the lived experience. Their goal was to develop the ‘consumer representatives’ skills, knowledge and confidence. (GSNV’s Advocacy Project a couple of years ago used this model as a guideline…but we used the term “Community Consultant”.)

Lyn Swinburne talked about the process and their catch phrase “nothing about us without us”.

“A good process can mean better research, a more informed community and maybe even bigger bucks for research!” – quote from conference handbook.

This model for inclusion:

Identifies
Recruits
Appoints
Trains
Supports women as consumer representatives

Involve: Community Participation & UK Department of Health

Bec Hanley gave an overview of community participation in health research in the UK. INVOLVE is an advisory group funded by the Department of Health in England that aims to promote and support active public involvement in National Health Service, public health and social care research. INVOLVE has a lot of great downloadable things on their web site...check it out! (www.invo.org.uk)

Bec suggests two reps instead of one so they can support each other. Bec also feels that it is important to:

Have an advisory group or community representative support unit, to support people in their roles as consumer/community representatives on research projects,
Decide and clearly state who does the work between meetings,
Have people in senior positions supporting the project as influential champions.
Appreciate that just because its policy doesn’t mean it will happen in practice… involvement has to lead to change (no point in having consumer/community involvement if it’s just a rubber stamp).

Cancer Council NSW: Consumer Training Program

Sally Crossing from the Cancer Council of NSW spoke about their consumer training program. The Cancer Council of NSW doesn’t train people to do the research, but rather to participate on a research review panel as consumer representatives. 42 people have completed the two-day training program to date.

Enabling factors for consumer participation were

long term, sustainable funding for the project,
clear formal policies and protocols surrounding people’s involvement, and
dedicated resources for supporting their reps.

Mental Health Research: Brolganet

Kathy Griffiths spoke about Brolganet. The Brolganet web site has information about consumer participation in mental health research. Kathy noted that the priorities of consumers are very different from priorities of researchers and that often it’s the researcher’s priority that gets studied…not what is meaningful to people affected by that condition. An example was that what passes as “successful treatment” at a research level may not be good for people (e.g. unacceptable side effects)

SEMINAR PART 2: Barriers to Participation

Day two was ‘hands on’. We broke up into working groups to discuss the barriers to participation.

By the end of the session, we had collected a large board full of barriers. A few include:

the researcher not knowing how or when to include people in the research, and
the community not understanding jargon, research processes or feeling welcome/supported.

Possible Solutions

Possible solutions to overcoming barriers to participation included:

developing a training strategy
early career training for researchers on engaging people
Suggest changes at NHMRC to be more inclusive of consumer involvement (? a requirement of grants they fund)
National body with register of research currently being undertaken, possibly with a list of people (community reps) willing to participate
Use alternative forms of communication – eg use internet to facilitate participation for people in rural areas
Research funding bodies should reward proposals that focus or feature community participation

What’s next

As a result of the meeting, an email group is being set up to help maintain communications between participants.

Conference organisers are writing to NHMRC outlining the suggestions of the conference and asking them to:

Require consumer participation in research projects they fund
Set up (or be involved in) a national body that trains and supports community participation in research

The conference handbook lists the presentations in more detail, along with web site information if you wish to get more information. A copy of the handbook is in the GSNV library please feel free to drop by and have a look.

(Please note, the term ‘consumer’ was used by some conference participants to describe their work; and hence appears in this report. GSNV prefers to use the term ‘community representative’.)

Visit the Consumers Health Forum Australia website at www.chf.org.au office for excellent Fact Sheets for consumer representation.

For more information on anything you’ve read here, please contact Penny or Leah in the GSNV office on (03) 8341-6315.