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Resources for Researchers

Engaging patients in preclinical laboratory research can help to improve research relevance and quality, allows for mutual learning opportunities (e.g. researchers can learn more about the day-to-day realities of the condition they study and patients can learn more about ongoing research), and can enhance researcher communication skills. Patient engagement does not refer to participation in research (e.g. sample donation, advocacy). Rather, it is about the active involvement of patient partners throughout the full research process including being involved in priority setting, question development, and dissemination of results.

Ultimately, engaging patients at this early stage of research, when therapies are first being developed and tested, may help to streamline research efforts through a collaborative approach.

To learn more, see below for considerations and resources for research teams.

“We wanted to keep things out in the open, to help the [glycogen storage disease] community feel part of the research, to feel invested and empowered ” – Dr. David Weinstein

Guiding Framework for Patient Engagement in Preclinical Laboratory Research

Our team has developed a guiding process framework that breaks down the stages of preclinical research and identifies opportunities for patient engagement.
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Considerations for Researchers When Engaging Patient Partners in Preclinical Laboratory Research

When first getting started we recommend reaching out for help! There are a number of organizations and groups with expertise in engagement who can provide guidance, resources and help to connect you with patients interested in engaging in research. When starting a new engagement initiative we often reach out to organizations that we have a working relationship with to help us share an advertisement to identify interested patient partners.

We recommend checking to see if your local institution has a centre or individuals with expertise. For instance – within the Ottawa Hospital there is an Office for Patient Engagement in Research Activities (OPERA) which provides consultations and can help you to connect with patient partners. Each province also has a Strategy for Patient Oriented Research (SPOR) SUPPORT Unit – which can provide resources and may have available funding opportunities. Another idea is to make connections with relevant patient organizations.

To develop an advertisement to identify interested patient partners, it is important to reflect on your goals for patient engagement, and to provide key details for consideration (I.e., anticipated time commitment, compensation, supports). See below for an example and click the button for more details.

Example
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HELPFUL TIPS

Once you have identified interested patient partners, it’s then important to hold an onboarding meeting (or meetings). During this time, you can further discuss each team members’ expectations for the partnership, patient partner interests, and time commitment/availability. At this or subsequent meetings you may also further describe and discuss your research, and begin to discuss ideas for working together (see our Framework page for ideas).

Key Considerations for Onboarding Meetings: 

Throughout the project, it is essential that team members use a shared vocabulary. Try to avoid the use of technical terms and acronyms, or take the time to ensure these terms are well-explained. It is also important to develop accessible materials (e.g., slides, infographics, non-technical summaries) to help explain the research project and concepts. 

Discuss patient partner interests and availability and co-develop activities that are tailored based on patient partner preferences. 

Aim to create a supportive environment where partners feel comfortable to contribute their ideas, take part in discussions and ask questions. 

As with any collaboration, it is very important to maintain communication throughout the project. Patient partners should be kept up to date on project progress (as well as delays in the project). 

After initial onboarding, patient partners still interested in joining should then work together with the team to co-create a terms of reference. This document is meant to outline a shared set of expectations to ensure everyone is ‘on the same page’. The terms of reference also provides an opportunity to discuss and brainstorm goals for patient engagement and how you would like to work together. Though it is important for the research team to reflect on their goals in advance and to come prepared with ideas for working together, it is also important to discuss these with patient partners. Make time to hear their ideas and co-develop a plan together.

  • The terms of reference can be drafted by the team from initial onboarding discussions, then shared with patient partners for input and feedback.
  • Once the terms of reference draft has been shared, we find it is helpful to host a meeting to discuss the contents to obtain patient partner input. Once feedback has been incorporated, this version should be shared with all team members.
  • Treat the terms of reference as a ‘living document’. Make plans to review the document regularly over time with patient partners and the rest of the research team. It is important to assess what’s working, if there are any areas for improvement, and make updates as needed.

Template of a Terms of Reference for Collaboration

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Example Terms of Reference
 

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In preclinical laboratory research it is especially important to create a supportive environment where patient partners feel comfortable to contribute their ideas, and space for them to do so. A few key suggestions include:

  • Ensuring there is an opportunity to introduce patient partners to all members of the research team.
  • To create an even playing field, drop titles (I.e. use first names instead of ‘Dr.’)
  • Add an icebreaker question or activity at the beginning of initial meetings to help team members get to know each other, and feel more comfortable to share their ideas. (Ex. If you could travel anywhere in the world, where would you go?)
  • Include time on meeting agendas for discussion and encourage everyone to ask questions if they are unsure of a term or concept.
  • Offer one-on-one meetings if someone would like to learn more about a certain concept or topic, or if they are unable to attend a meeting.
  • Use polling tools to help schedule meetings at dates and times that work for everyone.
  • Emphasize that this is a new area for patient engagement and that we are still learning what works best; encourage feedback and suggestions!
  • As with any collaboration it is important to maintain communication and provide updates throughout the project to ensure everyone is on the same page.

 Key Contact: It is helpful to have a key point of contact that can answer questions or have one-on-one meetings with patient partners to discuss recognition and compensation. 

  • It is the responsibility of the researchers to initiate conversations around compensation.  
  • At the onboarding meeting, it’s important to be transparent about what you can offer in terms of compensation and then schedule one-on-one discussions with each patient partner to ensure that their unique needs and preferences are met.  
  • For example, discuss how patient partners want to be recognized, method of financial compensation (honoraria, gift cards, gift) and payment schedule.

Reimbursement: It’s important to consider whether patient partners will face any costs associated with engagement (e.g. parking) and plan to reimburse them for these costs. Patient partners shouldn’t pay out-of-pocket to be engaged in research. 

Resources:
– SPOR Evidence Alliance. Patient partner appreciation policy and protocol. SPOR. 2019
– Considerations When Paying Patient Partners in Research

 

Honorarium: In addition, we recommend offering honoraria (e.g., cheques) to recognize partner time and efforts.  

  • Accepting honoraria valued above a specific monetary amount (consult appropriate revenue agency for further details) is considered taxable income. Thus, accepting honoraria may have tax implications or jeopardize patient partner ability to accept governmental social security support. 
  • In order to process honoraria, patient partner addresses and Social Insurance Numbers are often required. It’s important to make this clear to patient partners in the event that they don’t feel comfortable sharing this information.  
  • If patient partners express concerns about accepting financial compensation, offering gift cards to retailers of their choosing may be a reasonable alternative. 
  • See guidelines below for suggested rates, amounts and considerations

Resources:
– SPOR Evidence Alliance. Patient partner appreciation policy and protocol. SPOR. 2019
– Considerations When Paying Patient Partners in Research

 

Co-Authorship: Patient partners may also be offered co-authorship or acknowledgement (depending on their contributions). It is important to clarify that if patient partners are listed as coauthors, then their names in association with the published manuscript will be made public.   

  • For example, patient partners may refuse co-authorship because of privacy concerns or if they have experience of a health condition that is stigmatized. 

Other: Discuss with patient partners to identify any other supports they may need to be involved (e.g. training, printing of documents). 

Resources:
– SPOR Evidence Alliance. Patient partner appreciation policy and protocol. SPOR. 2019
– Considerations When Paying Patient Partners in Research

As with any collaborative partnership, it is important to check-in and reflect on what is working well, and where there may be areas for improvement. There are many existing tools available for the assessment of your engagement approach . The Public and Patient Engagement Evaluation Tool Version 2.0 in particular includes surveys for both patient partners and researchers to obtain input and feedback from all team members.

When working with patient partners, it is also very important to actively avoid tokenism (“a false appearance of inclusiveness”). Though there is no one way to do this, important steps include:

  • Reflecting from the very beginning on why you would like to work with patients on your preclinical laboratory research.
  • Having open and honest conversations with patient partners; this is a new area for patient engagement and we are still learning how to work together. Emphasize that you are open to feedback and suggestions.
  • Ensure you keep patient partners updated on how things are progressing (even if it is to let them know that things are taking longer than anticipated).
  • Don’t make assumptions and ensure you ask patient partners for their input and preference throughout the entire project (e.g. attendance at meetings, providing input, if they would like to be acknowledged for their work in presentations or papers, etc.).
Tokenism : Seeing it. Fixing it. Perspectives from IMHA Patient Partners

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When initially deciding to partner with patients in preclinical laboratory research, it is important to consider any costs patient partners may face so that they can be reimbursed (e.g. parking), as well as any supports that you will offer (e.g. compensation, training), so that these can be included within your budget. A formal budget justification, citing relevant guidelines, should also be prepared for grant applications. The Canadian Institutes of Health Research and associated SPOR units often provide funding opportunities for patient engagement.

See below to learn more about budgeting for patient engagement.

ADDITIONAL RESOURCES

How can Patient Partners be engaged in Laboratory Research?

Researching Animal Research: What humanities and social sciences can contribute to laboratory animal science and welfare