Budgeting for Public & Patient Engagement in Health Research

By Carolyn Shimmin

It’s important for health researchers to appropriately and adequately budget for patient and public engagement in their research projects. When applying for research grants, funders like the Canadian Institutes for Health Research (CIHR’s) Strategy for Patient-Oriented Research (SPOR) will be looking to ensure budgets have been thoughtfully allocated to promote inclusive and meaningful involvement of people with lived experience of health issues.

Below are some suggestions for consideration when building a comprehensive engagement budget. The Patient Engagement Team here at the George & Fay Yee Centre for Healthcare Innovation (CHI) has a free Excel-based budget builder (and other great resources) you can find on at https://umanitoba.ca/centre-for-healthcare-innovation/tools-and-resources. For a detailed walk-through of the budgeting tool, check out this post.

2021 Update: Though many of these considerations still stand, the global pandemic situation means in-person engagement isn’t feasible at this time. Though we haven’t removed considerations like food, parking, or transportation (in the hopes that we will one day soon be seeing each other in person again), we have added some considerations related to virtual and distance engagement that may be helpful.

1. Compensation for Time, Energy & Expertise

Public and patient partners’ contributions of time, energy, and expertise are of great value to health research, and should be accordingly compensated. This can include:

• A fixed service income, either hourly or daily — note that this should be, at the very least, what is considered a Living Wage;
• An honorarium for attending a meeting or workshop;
• In-kind compensation or a gift — this can include something that will help empower patient and public partners or help them on their journey to recovery. Examples include tuition for a course, yoga or meditation classes, and computer software (e.g. MS Office);
• A donation to a charity of the patient/public partners’ preference.

In some cases, the public or patient partner may decline payment in any form. Make sure to have a conversation at the beginning about how public and patient partners would prefer to be compensated for their time and contribution.

For specific guidelines, download SPOR’s Chronic Disease Networks Recommendations on Patient Engagement Compensation.

2. Care attendants and/or caregivers

Some people with lived experience of a health issue(s) may require a care attendant and/or caregiver to attend with them, which means factoring in compensation, food, travel, accommodations for them as well.

3. Transportation

In addition to local transportation, such as bus, taxi, or car mileage (plus parking — see #4 below), this can also include transportation to remote, rural, or distant areas, which may require flights, trains, and ferries — as well as luggage costs. Travel companions are also often a requirement for people living with a disability, and should be considered.

4. Parking

Research teams should strive to hold meetings and workshops in places that don’t require paid parking. If that is not achievable, it’s preferable to have parking passes on hand so people don’t have to pay out-of-pocket for these costs.

5. Childcare & Caregiving

Many public and patient partners have children, grandchildren, grandparents, parents, and/or other relations who they will need to take care of during the hours they hope to be involved with a research project. Childcare and caregiving should be provided for if patient and public partners have to hire babysitters, take their little ones to daycare, or care for others they may be responsible for looking after, in order to attend research meetings and workshops.

6. Interpreters & Translation Services

In planning for public and patient engagement, it’s important to consider that some public and patient partners will have a first language that is not English — and so costs for interpreters and translators must be accounted for. If partners are living with a hearing impairment, hiring a sign language interpreter should be a consideration.

7. Audio/Visual Equipment

If public and patient partners are living with a disability like a visual or hearing impairment, they may require additional equipment and technology to support and facilitate their participation.

8. Accessibility of Spaces

Some public and patient partners may be living with a disability and require wheelchair access or other accessibility options for participating in meetings and workshops. Ensure that the locations chosen are accessible for people of all abilities. Safe spaces also need to be considered — this may mean holding a workshop or meeting somewhere in the community vs. in a hospital, university or institutional setting (which can often be retraumatizing).

9. Accommodations

Some public and patient partners may have to stay a distance away from home to participate in research projects, and some people with lived experience of chronic health issues may be unable to travel a long distance in a single day. Hotel rooms and other comfortable accommodations should be considered, and public and patient partners should be asked about their accommodation needs in advance. Note that public and patient partners should not be asked to share accommodations, as many have certain routines and requirements that may be disrupted by the presence of another person.

10. Food & Beverages

Have you ever been at an evening meeting without food, and it made you feel not so great (and potentially hangry)? Chances are you’re not the only one who felt that way. It is important to feed people at meetings and workshops, even if they don’t coincide with traditional meal times. The choices should also consider potential dietary restrictions (including allergies, chronic conditions such as diabetes, and preferences such as veganism), and focus on healthy and nutritious snacks and meals.

11. Printing & Materials

If there are documents that need to be used in meetings or workshops (as there almost always are), patient and public partners shouldn’t have to (and may not even be able to) print these themselves. The costs and coordination of printing should be considered, as well as any materials or supplies that may be needed for different engagement activities or participatory approaches (e.g. pens, paper pads, sticky notes, flipcharts, etc.).

12. Elders, Counselors & Supports

Be sure to consider payment for Elders, counselors, or other supports to attend, including cultural gifts like tobacco and compensation for their time and contribution to the meeting. Remember that it is important to have supports in place for public and patient partners, recognizing that sometimes experiential knowledge is also intertwined with experiences of trauma.

13. Gifts for Speakers

Thoughtful gifts are an excellent way to acknowledge and show appreciation for public and patient partners who facilitate and participate in workshops, including everyone who shares their stories and knowledge. Gifts can be small, for example coffee mugs, small works of art, and even gift cards.

14. Professional Facilitators

Consider if workshops might need a professional facilitator to help direct and move conversations forward — especially if there are difficult subjects to discuss.

15. Conferences

If the opportunity arises for public and patient partners to attend and/or present at a conference on behalf of the research team, make sure that registration, flight, accommodations, ground transportation, food, and compensation for lost wages and contribution of time while attending is taken care of in advance, and that public and patient partners do not have to incur any out-of-pocket expenses.

16. Virtual Engagement

With social distancing and isolation requirements, particularly for some people with lived experience of health conditions, the time when we could engage in person seems like ages ago. At the same time, engagement ‘at a distance’ still seems new and foreign to many of us — and is just as important for ensuring people’s voices are heard in the context of health research. We urge research teams looking to engage with patients and members of the public to conduct a pre-assessment of needs for meaningful and inclusive engagement, and build in budget considerations that address new barriers related to virtual and distance engagement activities. This may include short-term provision of internet or phone services, webcams or devices for participation in virtual meetings, additional training (both for researchers and patient partners), and perhaps even videoconferencing subscriptions (e.g. Zoom, WebEx, Cisco) for research teams planning to engage through this platform.

What do you think? Are we missing anything that you think should be considered when budgeting for public and patient engagement in health research?

Want to learn more? Watch the March 14, 2018 Public and Patient Engagement in Health Research Lunchtime Learning Session: Budgeting for Public and Patient Engagement in Health Research:

About the Author

Carolyn Shimmin (@CarolynShimmin) is the Public and Patient Engagement Lead at the George & Fay Yee Centre for Healthcare Innovation (CHI). Her experience includes stakeholder engagement, research, writing and reporting on various health policy issues including mental health, addictions, trauma and the sexual exploitation of children and youth. Areas of interest include patient engagement, lived experience research, knowledge translation, trauma-informed approaches, intersectional analysis, and poststructuralist queer theory.