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.
  • Discussions with community networks
  • Holding an event/discussion group
  • Working with organisations that support the public
  • Consider using an independent facilitator
Obtaining funding

Many funders employ public reviewers to achieve a broader perspective.
  • Consumer involved as reviewers of project proposals
  • Consumer contributors for monitoring project progress and processes
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.
  • Consumers reviewing and providing feedback on patient education material
  • Consumers assisting in recruiting participants
Managing the project

Helps ensure a consumer perspective is maintained throughout; and that the project is adequately budgeted and funded.
  • Membership of a Steering Group/Management Committee
  • Member of the project team
Undertaking Gathering and reviewing data and evidence.
  • Undertaking library-based research
  • Carrying out interviews
  • Running focus groups
  • Developing research tools
  • Analysing/interpreting results (identify themes, checking the validity of conclusions from a public perspective, highlight important findings to the public audience)

Disseminating

Helping to identify important networks for disseminating the findings and summarising the findings in accessible language/format
  • Producing reports/newsletters
  • Providing feedback to contributors/participants
  • Present at conferences
  • Co-author journal articles
  • Distributing information through community networks

Implementing

Consumers add a different route to effecting change, they can bring passion and enthusiasm to implementing findings.
  • Advising on how the results of project should be shared and applied in clinical practice

Evaluating impact

Consumers can monitor and evaluate public involvement and its impact.
  • Input into impact measurements and evaluation tools and processes

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

When to begin
Models for consumer and community involvement