Preparing a budget
The key considerations when preparing a budget and a Cost Calculator can be accessed on this page
For partnerships to be successful there must be benefits on both sides. Offering payments to consumers who undertake consumer involvement activities is considered international best practice. It is therefore important to consider how to adequately compensate those you involve. Payment and reimbursement for consumer involvement:
- is a material way of acknowledging the value of the consumer representatives or organisations that you plan to involve.
- allows a broader range of people to be involved by removing the barriers that stop some individuals from contributing.
- may increase the sense of equity within the group or committee if researchers and other staff are being paid for their time.
For individual studies, consumer involvement costs should ideally be accounted for in the funding application. The NHMRC has published a statement on consumer and community involvement in health and medical research. This document encourages researchers to consider the benefits of actively involving consumers when they apply for research funding.
To ensure you have sufficient resources, you should plan for involvement as early as possible in the project lifecycle so that an adequate budget can be developed. Costs for consumer involvement will include both payments to consumers for their time, effort and expertise as well as reimbursement for any costs incurred as part of the involvement activity
Consider building in an additional budget if you are going to recruit consumers from further afield as travel costs will be higher and also some groups with special needs may require additional resources (e.g. carer to support attendance at a meeting).
A Consumer Involvement Cost Calculator has been developed to help cost your involvement activities.
Consumers and researchers may discuss alternative forms of reimbursement for their involvement, which may be in the form of attendance at conferences, social events, training courses etc, and as such there may be costs associated which need to be considered.
Levels of Payment
Organisations should consider developing a policy covering payments and reimbursement. Payments should reflect the level of expertise, commitment and responsibility that the activity demands. For example, consumer representatives who are part of the research team (e.g. carrying out interviews or undertaking data analysis) should be paid at rates that are consistent with members of the research team performing similar roles.
When commercial organisations work with consumers or consumer groups, they must manage real or perceived conflicts of interest and must ensure that any payments are reported transparently (usually through public disclosure) and in accordance with local laws. Payments should reflect fair-market value. Medicines Australia have developed guidance on their Working Together Guide webpages. International guides such as the Working with Patients and Patient Organisations a Sourcebook for Industry and the Clinical Trials Transformation Initiative: Effective engagement with patient groups around clinical trials, provide information on fair market value payment and the principles that should underpin all collaborative working.
Payments to consumers are not the only costs to consider. Additional costs may include those incurred when advertising for involvement opportunities, the cost of providing lunch or other refreshments at meetings and external venue hire. The time/salary costs of staff responsible for coordinating involvement activities should also be considered.
- US PCORI: Payments Guidance: Financial compensation of patients, caregivers, and patient/caregiver organizations engaged in PCORI-funded research as engaged research partners (2015)
- UK INVOLVE: Policy on payment of fees and expenses for members of the public (2016)
- EUPATI: Guidance documents on patient involvement in R&D (2016)
- Levitan, B et al. Assessing the Financial Value of Patient Engagement: A Quantitative Approach from CTTI’s Patient Groups and Clinical Trials Project. Ther Innov Regul Sci (2018);52:220-9