Researchers are often unsure about how to budget for research inclusion, and whether adding in additional costs to make studies inclusive will make their bids less competitive. In response to these concerns, NIHR’s latest guidance for applicants emphasises that not only is budgeting for research inclusion welcomed, but, as of 27 November 2024, will be an explicit requirement for all projects.
Reaching out and developing relationships with under-served groups can be time-intensive and costly. However, it is essential in order to conduct research which meaningfully addresses health and care inequalities and provides equitable opportunities for research participants and public contributors. It is also key to avoiding research waste, as has also been argued by the authors of the INCLUDE Ethnicity Framework.
“Time and money invested in trials recruiting diverse populations are likely to deliver more relevant research, with a consequent reduction in research waste and misallocated healthcare resources in the longer term” (Treweek et al. 2021: 9-10)
The need for research to be inclusive to avoid waste or exacerbating existing health, care and social inequalities relates to all types of research, not just trials. However, there is a lack of guidance on how to accurately cost for the research inclusion aspects of research projects. In the remainder of this section, we outline some of the additional costs and time commitments which inclusive research entails, as well as some steps that can be taken to minimise these costs.
1. What additional costs need to be factored in when designing inclusive research?
2. How might embedding EDI extend the timelines of your research?
There is no one-size-fits-all approach, and each study’s needs should be considered carefully. Any inclusion costs should be clearly justified in applications, just as other design and cost decisions are. The following table lists some of the possible additional costs that may need to be budgeted for when conducting inclusive research. This list is not necessarily exhaustive, and not all these costs will be relevant to every research project.
| Domain |
Potential additional costs |
Time implications |
| Research team |
- Including a co-applicant who brings expertise in research inclusion and/or with specific under-served communities
- Cultural competence or other relevant training
- Employing a community engagement worker/community researcher in your team
|
- Building long-term, trusting relationships with local/under-served groups needs to start before the study design phase. It takes time and is an ongoing activity throughout the study and beyond
- Time to recruit, train and supervise community researchers/ community engagement workers
|
| Public involvement |
- Involving one or more public co-applicants to bring a greater breadth of lived experience
- Involving more public contributors to capture greater diversity
- Co-production approaches will involve more regular meetings and therefore will increase meeting costs
- Room hire and travel to community venues rather than using university/ NHS premises
- Covering respite care costs, providing a creche or enabling public contributors to attend with a carer
- Paying for accommodation or splitting longer meetings across two days to enable the involvement of people who need regular physical and/or mental breaks.
- Promotional materials for community engagement activities (if text-based, in a range of languages and formats)
(see data collection for other relevant considerations for making public involvement more inclusive) |
- Significant additional time investment for community engagement which needs to be reciprocal; or for user-generated or co-produced approaches to PPI
- Helping public co-applicants fill out relevant sections of online grant application forms when required
- Being flexible in your approach to working to engage with people who are only available on evenings and weekends
|
| Selection of participants, sites and samples |
- Recruiting a more diverse sample can require multi-pronged recruitment strategies. Costs may include:
- Producing posters/flyers/videos in multiple languages or formats
- Paying for targeted advertising in local or national media or charity newsletters, on social media (e.g. Facebook, Twitter), or in public spaces
- Attending community events – travel costs, stall hire, promotional materials
- Recruiting, training and supervising paid community researchers or community engagement workers who will facilitate recruitment
- To retain participants, keeping in touch in a range of languages and formats
- Larger samples of under-served groups may be needed to enable subgroup analyses to be sufficiently powered
- Additional sites may be needed when recruitment focuses on under-served groups
|
- Staff time to pursue more community-based recruitment strategies (attending events, appearing on community radio etc)
- More time to set up sites that are not used to hosting research and to recruit and train appropriate staff
- Time to monitor gaps and conduct preliminary analyses of the sample characteristics
- Time to target under-served groups and/or address attrition amongst particular groups
- Additional time for ethics and protocol amendments if recruitment strategies need to change
- Recruitment may be much slower when a representative sample or under-served group is sought
|
| Data collection |
- Making participant information sheets and consent forms available in different formats, languages and media (e.g. a video version for participants who are visually impaired or not literate, a British Sign Language version, or a more visual or animated version)
- Recruiting, training and paying interpreters or bi/multi-lingual research staff to seek consent from participants
- Translating and culturally adapting intervention materials, outcome measures and other data collection instruments
- For interventional studies, offering a range of times/venues and options for groups differentiated by sex, language etc. Often, people from poorer socio-economic backgrounds cannot take time off work during the day
- Collecting in-person outcome measures in participants’ local areas or homes to reduce time and travel burden
- The use of interpreters specifically trained for your research
- Higher costs of transcriptions that are conducted in languages other than English because they have to be back-translated
- Childcare or respite care costs
- Travel expenses, including taxi fares where required to participate
- Compensation for loss of earnings for those who need it
- Room hire costs and researcher travel costs if community venues are being used to increase accessibility
- Inclusion of extra variables related to research inclusion in trial or secondary data sets may increase consumables and data management costs
- Equipment and facilitation costs for more innovative or creative methods (e.g. cameras, arts materials)
|
- Additional time to generate, review and seek PPI input on participant information and consent materials
- Time to brief, debrief and train interpreters in informed consent and specific terminology
- Working with interpreters will increase staff time and transcription time as interviews will be much longer
|
| Data analysis and presentation |
- Wider PPI input so that a more diverse range of perspectives is included
- Staff time to have multiple researchers analyse the data set to reduce bias
- Costs for statistician with suitable experience for any planned analysis related to, or factoring in demographic characteristics
|
- Time to undertake additional exploratory statistical analyses which focus on participant demographics/intersectionality
|
| Dissemination, implementation and impact |
- Making the findings available in different formats, languages and media – costs may include an illustrator/ artist/ designer, video production, translation, holding events in communities to feedback and thank public contributors and/or participants
- Financial support for community organisations/charities to assist in the dissemination of research findings
- Accessibility consultant to review outputs
|
- Time for more community-focussed dissemination activities, and for (co-)producing and consulting on varied outputs
- Time to develop mechanisms for measuring the impact of the findings on inequalities
|
3. Are there steps that researchers can take to reduce costs?
The above list of potential costs may seem daunting and it may not be realistic to try and accommodate them all. There are steps that you can take to try to reduce these costs, as follows:
- Although some teams include a co-applicant who primarily provides EDI expertise, this would not be necessary if the core team has the appropriate range of research and lived experience.
- Recruit paid community engagement workers who can provide links to key contacts and organisations, support community engagement and public involvement activities, recruitment and retention of research participants, dissemination of findings.
- Local community organisations may be able to help to facilitate community engagement and also research participation. However, ensure that you offer a meaningful financial contribution towards their time or other recompense e.g. delivering training or community talks, helping with bid writing, access to university facilities.
- Employ bi/multi-lingual research assistants or research nurses to reduce interpreter or translation costs and time for consenting and data collection activities. This will also improve the dynamics of conversation as it won’t be mediated through a third party.
- If you need to collect outcome measures using a language other than English, check whether a translated version of your chosen measure or another appropriate measure is available. However, translated versions can lag behind English language versions so may not be fully comparable.
- Developing a new public involvement group is time- and labour-intensive. Work on/advocate for increasing the diversity of any existing public involvement groups or patient/service user forums in your contexts so that a diversity of lived experience becomes the norm. This will make embedding EDI easier in the long-run.
- Consider accessing established public involvement groups (for which there is likely to be a fee); for example:
|
NIHR are committed to funding costs associated with inclusive research. Researchers should include the costs necessary to deliver the research inclusively and to reach and retain a diverse sample of participants, in line with what is required to answer their research questions. As with all costings associated with their research, the inclusion costs should be clearly justified by relevant evidence or design decisions included in the application. Proposals for such costs are assessed on a case-by-case basis within the context of the research application. It is important to offer a strong and compelling justification for the need to increase the engagement and participation of minority and/or under-served groups, and a clear explanation of the costs that this entails.
Budgeting for inclusion