What is Consumer Involvement in Research?
Consumer involvement means research being conducted with input from people with lived experience, rather than consumers only participating as research subjects. In grant development, consumers may help identify research priorities, review study design and participant burden, consider patient-important outcomes and recruitment barriers, and contribute to decisions about how research is conducted and communicated.
Consumer and community involvement is increasingly prominent in health and medical research funding. But a strong grant application needs to demonstrate more than the fact that consumers were consulted.
Reviewers should be able to see what consumers contributed, whether their input influenced the proposed research, how they will continue to contribute during the study, and how their involvement is appropriately supported.
Getting Started with Consumer Involvement in Research Grants
Chances are you’ve already met consumers, or undertaken consumer engagement, but how do you demonstrate consumer involvement in grant writing?
TOGA has developed a TOGA Consumer Review and Grant Planning Tool to help researchers involve consumers while a study is still being developed and then translate that involvement into evidence for the grant application. The tool prompts researchers to explain their proposed study to consumers, ask focused questions, record what consumer input confirmed or changed, and identify where this evidence should appear in the grant.
To see how the tool can work, review the completed form for a fictional study.
Additionally, you can access free training on consumer and community involvement (CCI) in grant writing.
When Should Consumers be Involved in a Research Grant?
Start early, while the research can still change. Consumer involvement is most useful when it begins before the research design and grant application are finalised. This provides an early opportunity to consider the proposed research from a lived-experience perspective.
Where a grant would benefit from more detailed discussion, investigators can also request a separate review with a broader group of TOGA consumers. This allows more time to explore issues such as study burden, endpoints, recruitment and access before the grant is submitted.
The objective is not to add consumer review as the final step before submission. It is to create enough time for researchers to consider and respond to the input they receive.
More involvement is not necessarily better. The goal is purposeful consumer involvement where lived experience can inform the research, with clear evidence of what consumers contributed and influenced.
Consumer Involvement in Research Priority Setting
Consumer involvement does not necessarily begin with an individual grant. Consumers may also contribute to research priority setting, including through forums where researchers and consumers consider unmet needs and potential research questions together. If a proposal subsequently addresses a priority identified through one of these processes, this is relevant evidence for a grant application.
The application can describe the sequence:
Researchers do not need to ask a new group of consumers to rediscover the same unmet need simply to demonstrate involvement. Instead, the application should explain how previous priority-setting informed the research and then show how consumers contributed to the development of the specific proposal.
How to Involve Consumers in Research Design
Asking consumers “What do you think of our study?” is unlikely to produce the most useful input. Consumers can contribute most effectively when researchers explain the proposed study in accessible language and ask focused questions about areas where lived experience provides expertise.
The TOGA tool structures review around six areas.
1. Research question and potential benefit
Explain the research question, the unmet need and what the study is intended to achieve.
Ask: Does the study address an important problem or unmet need for people affected by lung cancer? Is the potential benefit meaningful?
This can either identify a problem with the proposed research or provide evidence that consumers consider the research relevant and worthwhile.
2. Primary and secondary outcomes
Explain the primary endpoint in plain language and describe the major secondary outcomes.
Consumers can then consider whether the primary outcome is important to patients, whether the relative priority given to different outcomes is appropriate, and whether important outcomes are missing. These might include symptoms, quality of life, toxicity, function, treatment burden, time spent receiving healthcare or effects on everyday life.
Consumers do not need to select the statistical endpoint or design the analysis. Their contribution is to test whether what researchers propose to measure adequately captures outcomes that are important to patients.
3. Would patients participate?
Explain what participation actually involves, including the intervention, randomisation, potential risks and additional study requirements.
Ask whether people would consider participating and what might encourage or discourage them.
Consumers may identify aspects of randomisation, testing or treatment that are difficult to understand or could make people reluctant to participate.
4. Participant burden
Consumers should be able to see what participation requires beyond usual care. Where available, providing the Schedule of Assessments can be particularly useful.
Ask about additional visits, blood tests, scans, biopsies, questionnaires, treatment, travel, time away from work or family and out-of-pocket costs. This can identify opportunities to reduce burden before the protocol is finalised.
5. Access and inclusion
Explain who can participate, where the study will run and the important eligibility requirements.
Consumers can help identify whether the proposed design could unintentionally make participation harder for particular groups because of geography, age, disability, language or cultural needs, financial burden or access to trial sites.
6. Ask what you have missed
Finally, give consumers an opportunity to consider the study as a whole. There may be an issue that does not fit neatly into the questions researchers thought to ask.
The form will also prompt you to record what happened to the feedback. Consumer involvement does not mean every consumer recommendation must be adopted. The important step is demonstrating that the input was genuinely considered.
The TOGA tool therefore asks researchers to record each outcome as:
Confirmed as proposed | Modified following consumer input | Consumer recommendation not adopted
It then asks researchers to document:
This distinction is useful when writing the grant.
If consumers recommend a change and it is adopted, describe the change: Consumers identified treatment-related travel as a potential barrier to participation. In response, telehealth follow-up was incorporated where clinically appropriate.
But confirmation can also demonstrate involvement: Consumers reviewed the proposed primary endpoint and considered it meaningful to patients. No change was recommended.
A research team should also be able to document why a recommendation was not adopted. That does not necessarily need valuable space in the grant application unless it is particularly relevant. The project record can retain that information while the grant focuses on the strongest evidence of consumer contribution.
How do you Demonstrate Consumer Involvement in a Grant Application?
Once the review is complete, do not confine everything that happened to the dedicated consumer involvement section. The application should tell a consistent story.
The TOGA tool asks researchers to identify where each piece of consumer input belongs, including the plain-language summary, significance and rationale, study design, endpoints, feasibility, recruitment and retention, diversity and equity, impact and translation, as well as the dedicated consumer involvement section.
For example, if consumers influenced an endpoint, that should be visible where the endpoints are described. If they identified a recruitment barrier that changed the study design, the resulting strategy should appear in the recruitment or feasibility section.
The dedicated consumer involvement section can then bring those contributions together rather than introducing them for the first time.
How to Involve Consumers Throughout a Research Study
A strong application should also distinguish involvement that has already occurred from involvement proposed if the grant is funded. The appropriate role will vary between studies.
For a clinical trial, ongoing involvement might include review of participant-facing materials and the Participant Information and Consent Form, review of the Schedule of Assessments where relevant, advice when recruitment or retention problems emerge, and involvement in interpreting or communicating findings.
Consumers may also have representation on a Trial Steering or Oversight Committee, providing strategic input and contributing to decisions at key points during the study. This does not mean consumers need to participate in every operational or highly technical aspect of trial management. Their role should be defined around decisions and activities where lived experience can make a useful contribution.
The grant should therefore be specific. Rather than promising “ongoing consumer involvement throughout the project”, describe the role, when it occurs and what consumers will be able to influence.
How to Support and Resource Consumer Involvement in Research
Consumers should not be expected to arrive with expertise in clinical trial methodology. Researchers need to provide enough context for them to contribute their own expertise effectively.
The TOGA tool prompts researchers to consider clear roles and expectations, governance arrangements, remuneration, orientation or training, accessible information, administrative and meeting support, participation costs and an adequate allocation within the grant budget.
Additionally, remuneration should be planned from the beginning and supported by the appropriate guideline-specified rate rather than added to the budget at the end.
How to Involve Consumers in Research Dissemination and Translation
Consumer involvement should not finish when recruitment closes. Consumers can help researchers consider how findings should be communicated to participants and the broader community, review plain-language results summaries, contribute to dissemination through consumer networks, and provide perspectives on translation of findings into practice.
The grant should therefore answer two related questions: what benefit could this research produce for consumers and communities, and how will those communities hear about the results?
This is also an opportunity to demonstrate consideration of populations who may experience different access, disease burden or outcomes rather than treating “the consumer” as a single homogeneous perspective.
Grant Checklist
Before submitting, researchers should be able to demonstrate four things:
- What happened before submission? Who was involved, what they contributed, and what changed or was confirmed
- What will happen during research? Defined ongoing roles and areas of consumer influence
- How will involvement be supported? Governance, role clarity, remuneration, orientation and practical resources
- How will consumers and communities benefit? Relevance, patient-important outcomes, diversity and access, expected impact and return of findings to the community
The objective is not the greatest possible level of consumer involvement in every research activity. It is involvement that is purposeful, credible and appropriate to the research. A useful final test is the one built into the TOGA tool:
If they can, consumer involvement has become part of the research story rather than an additional section written shortly before submission.
Summary: Five Tips for Consumer Involvement in a Strong Grant Application
- Start early. Involve consumers while the research design can still change.
- Ask focused questions. Seek input on the research need, patient-important outcomes, participation, burden and access.
- Record the result. Capture what consumer input confirmed or changed.
- Show the influence throughout the grant. Don’t confine consumer involvement to the CCI section.
- Plan ongoing involvement. Define what consumers will contribute during the research, how they will be supported and how findings will return to communities.
Use the TOGA Consumer Review and Grant Planning Tool to structure your consumer review and turn the feedback into grant-ready evidence. Lean into the existing TOGA review pathway for endorsement to seek your consumer involvement.
Useful resources:
- Health Translation SA. Embedding consumer and community involvement in grant applications. Doing Research Together; 2019
- Research Excellence and Training Program. Consumer and community involvement and grant writing [Internet]. RETProgram; [cited 2026 Aug 21]. Available here.
- Getting Started with Investigator-Initiated Trials
- Turning a Concept into a Clinical Trial
- TOGA Consumer Involvement
- Develop your research with TOGA’s endorsement
- Conducting Research with Aboriginal and Torres Strait Islander Communities
- Consumer involvement in non-clinical or laboratory-based research
- Statement on consumer and community involvement in health and medical research 2026
