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 free online and downloadable budget planning tools you can use that have these considerations built in — check them out at https://chimb.ca/sub-sites/1-patient-engagement?page=79-budgeting-for-engagement.
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.
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 who are differently abled, and should be considered.
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 patientpartners 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 differently abled, and living with 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 differently abled 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).
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.
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.
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:
Visit https://chimb.ca/sub-sites/1-patient-engagement?page=79-budgeting-for-engagement to use the free budgeting tools for patient and public engagement.
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.