4. Involving Consumers in Research

Question 1

Explain importance of consumer and community participation (6)

Answer 1

Consumer and community participation can help to enhance or improve the quality of research

Current funding (e.g NHMRC) and policies often require some form of participation

Accreditation requirements may include consumer and community participation

Human Research Ethics Committees may require evidence of participation

Participation can help empower consumers and/or community members

The involvement of consumers and/or community members can increase the level of openness and transparency in the use of public funds

Question 2

Describe principles underlying consumer and community participation/involvement (8)

Answer 2

• Start participation as early as possible
• Participation must add value to the research, researchers and/or consumers and community members
• Be inclusive and reach out to diverse groups
• Treat everyone with respect and integrity
• Work in partnership
• Keep everyone informed and involved
• Use language that everyone understands
• One size doesn’t fit all – it’s important to work with consumers and/or community members to find what will work best for your research

Question 3

Identify the support and resources that need to be in place to ensure that participation activities are as effective as possible (6)

Answer 3

Senior level support and sign-off
Budget
Time
Training
A coordinator for the participation activities
Administration support

Question 4

Describe the process of planning for consumer and community participation

Answer 4

1. Being CLEAR about WHY you are planning to involve consumers and community members in your research
2. The DIFFERENT STAGES of the research cycle and how you might involve consumers and community members at each stage
3. The LEVELS of consumer and community participation that are possible in a research project
4. PLAIN LANGUAGE summaries and some advice on how to write them
5. METHODS you can use to involve consumer and community members in your research and how to choose which method is right for your project
6. THE DIFFERENT GROUPS of consumers and community members you might choose to involve and how to find them
7. Why you should consider EVALUATING consumer and community participation when you are at the planning stage and how you might go about this
8. BARRIERS to consumer and community participation in research and how you might overcome them

Question 5

What is a consumer?

Answer 5

Refers to people who directly or indirectly make use of a health service e.g. patients

Question 6

What is a consumer representative?

Answer 6

A member of a committee, steering group or similar who voices the consumer perspective

Question 7

What is a community?

Answer 7

A group of people sharing a common interest but not necessarily a common geographic location

Question 8

What are stakeholders?

Answer 8

An individual or group from within or outside the organisation who has a key interest in the research

Question 9

What is consumer and community participation in health research about?

Answer 9

Consumers and/or community members and researchers working in partnership to shape decisions about research priorities, policies and practices.

Question 10

The range of consumer and community voices?

Answer 10

Individuals receiving health care
Carers / family members who provide support.
Groups of consumers (share common illness)
Consumer organisations – advocacy, self-help
Potential consumers from population groups
Members of the community, includes future users of health services
Taxpayers/citizens who ultimately pay for services

Question 11

Planning for participation
1. Why are you involving consumers and community members?

Answer 11

To make research relevant and important to the needs of the people involved in the research
To show accountability to the people who have funded the research
To ensure that research is done respectfully and sensitively with a particular group of people.
To understand the perspectives of a range of people (diversity)
To ensure the results of research are put into practice.

Question 12

Planning for participation
2. At what stages will you involve consumers and/or community members?

Answer 12

At conceptualisation stage
Design
Implementation
Dissemination

Question 13

Planning for participation
3. What level of participation are you aiming for?

Answer 13

High level of consumer involvement - taking a leading role.
Equal partners - e.g. steering committees
Advise - researchers only go to participants for advice
Consulted - e.g. one-off community meetings
Informed - this is the study we have planned, no input from consumers

Question 14

Planning for participation
4. Can you summarise what your research is about in plain language?

Answer 14

A brief outline of a research project or research proposal that has been written for members of the public rather than researchers or professionals.
Sometimes referred to as lay or plain English summaries

It is important to consider the following:
Your writing style
Talk directly to your reader
Use simple words and avoid scientific jargon
Be direct –short sentences
Use active verbs rather than passive

Question 15

Planning for participation
5. Which method will you use?

Answer 15

The following are some suggested methods to use:
Writing or commenting on documents
Consumer and community forums
Consumers and community members in research teams
Research buddies
Reference groups
Steering groups
Consumer and community researchers
Consumer and Community Advisory Councils

Question 16

Planning for participation
6. Who will you involve?

Answer 16

Patients
Carers
Potential patients
Consumer representatives
Community members:

Question 17

Planning for participation
7. How will you evaluate consumer and community participation in your research?

Answer 17

Planning to evaluate at an early stage
Decide whether you will conduct a process or impact evaluation

Evaluating the process
This type of evaluation is about how well the participation activities functioned. For example:
Were all participation activities adequately budgeted for?
Were consumers and/or community members able to contribute effectively?
Were meeting papers sent to allow time for reading?
Were everyone’s expectations of the participation activities met?

Evaluating the impact of consumer and community participation
The impact of consumer and community participation on the research e.g. whether researchers made changes to documentation or recruitment practices

The impact on the researchers e.g. did they feel they learnt more about what it is like to live with a particular condition?

The impact on the consumers and/or community members who were involved i.e. did their confidence increase as a result of their involvement?

The impact on the organisation i.e. what has changed as a result of the participation activities?

Question 18

Planning for participation
8. How will you plan to prevent possible barriers occurring?

Answer 18

Plan to prevent the following key barriers:
Lack of time and money- include time for participation activities during planning, apply for funding for consumer and community participation activities in grant applications

Researchers’ lack of training and confidence- discuss the research team’s training needs and provide information about, and access to, training

Lack of evidence for the benefits- use publications from other countries

Concerns about ability and knowledge of consumers- discuss training needs and provide access to training or support needs identified

Language and terminology- plain language without using jargon and acronyms.