Module 2
Planning
Consumer and Community Involvement throughout the research or project cycle
Consumers can be involved in all or at any stage of the research or project cycle. Consider what knowledge or perspective you seek from consumers to determine which project stage they might most meaningfully contribute. The NHMRC recommends that consumer involvement needs to be planned at all stages of the research or project cycle.
The Research or Project Cycle
The research or project cycle |
Explanation |
Examples of consumer and community involvement activities |
---|---|---|
Identifying and prioritising |
Consumer involvement influences which project is undertaken; ensuring the project focus is relevant to people living with the condition. |
|
Obtaining funding |
Many funders employ public reviewers to achieve a broader perspective. |
|
Designing the project |
Helps ensure project is relevant to the needs of people; demonstrates the project is important to patients and members of the public; strengthens the ethics of a project; can improve recruitment of participants into the project, and may provide opportunities for involvement at various stages of the project. |
|
Managing the project |
Helps ensure a consumer perspective is maintained throughout; and that the project is adequately budgeted and funded. |
|
Undertaking | Gathering and reviewing data and evidence. |
|
Disseminating |
Helping to identify important networks for disseminating the findings and summarising the findings in accessible language/format |
|
Implementing |
Consumers add a different route to effecting change, they can bring passion and enthusiasm to implementing findings. |
|
Evaluating impact |
Consumers can monitor and evaluate public involvement and its impact. |
|
Table content above drawn from NIHR INVOLVE, UK and AbSPORU, Canada.
The video below with Dr Magdalena Skrybant, Patient and Public Involvement and Engagement Lead, Institute of Applied Health Research, National Institute of Health Research, Collaboration for Leadership in Applied Health Research and Care, West Midlands outlines how patients can be involved throughout the research cycle.
Others in the National Institute of Health Research (NIHR) UK, have similarly developed frameworks to demonstrate how to include consumers in all stages of the research cycle.
This is an example of a study‐focused framework for consumer involvement in research, produced by the NIHR Research Design Service:
Alberta SPOR Support Unit (2018), Patient Engagement in Health Research: A How-to Guide for Researchers
Complementing the NHMRCs (National Health and Medical Research Council) statement is a brief toolkit covering five areas:
- Expectations and Value – Framework for Effective Consumer and Community Engagement in Research
- Measuring Alignment with Consumer and Community Expectations in Research
- Measuring Effectiveness of Consumer and Community Involvement in Research
- Considering Impact of Research from a Consumer and Community Perspective
- Self-assessment of Consumer and Community Involvement in Research
National Health and Medical Research Council, Consumer Involvement
Hoddinott et al. (2018), F1000Research, How to incorporate patient and public perspectives into the design and conduct of research