PE-8: Five Point Checklist When Planning for Patient Engagement

By Carolyn Shimmin

#PEmeans meaningful change. I am a researcher and a nurse.

Oftentimes, I’m asked by health researchers for a simple checklist they can review in the initial stages of planning for patient, informal caregiver and/or public engagement of their project. I’ve pulled together five key nuggets of advice, based on some of my successes and failings in patient and public engagement.

The Earlier the Better

If there’s just one piece of advice I can give it is this: involving patients, families and communities at the earliest possible stage of the research process can lead to even richer engagement in the future and greater impact of research outcomes.

In giving patient partners opportunities to have a say, you may very well be strengthening not only the purpose — but also the meaning — of your study. And you most definitely will be working towards doing research that addresses the needs of communities living with the health issue in which you are researching. So from the onset, invite your patient partners to identify research priorities; shape and clarify the research question, and co-develop the patient engagement strategy.

Be Accessible

It takes time to build relationships with individuals, families, communities and organizations in order to ensure you have the breadth and diversity of perspectives needed for your research project. This can involve making yourself available to meet for coffee, attending community meetings where you can address questions and concerns people may have about the project, or even engaging with people online through discussions on social media. It also means using accessible language in all of your communications — free of jargon and acronyms.

Choose an Inclusive Participatory Approach

Sometimes health researchers perceive patient engagement as a process of training people with lived experience of a health issue to become a researcher. I absolutely love the idea of researchers helping to build capacity for peer and community researchers — but note, it’s a two-way street. Communities can teach researchers how to use traditional methodologies for inquiry that encompass the values and beliefs that are of importance to them as well.

But sometimes when opportunities for shared decision-making in the research process are identified — say, for example, identifying outcome measures of importance to patients — the appropriate participatory approach to help make this decision may differ depending on the needs of the people you are engaging. So instead of a meeting where you use a Delphi method, youth with lived experience of a health issue may prefer to do a Photovoice project — going around their communities taking pictures of outcome measures that are of importance to them. Remember, ask the people you are engaging how they would prefer to be engaged.

Safety First

Anyone who knows me knows that I am a strong proponent of trauma-informed practice in patient and public engagement. Discussions and check-ins around safety are not a one-time deal — but rather an ongoing practice throughout the research process. These discussion may include ensuring the space where the engagement is to occur is in no way re-traumatizing to people and communities with lived experience of a health issue. It must be acknowledged and understood that patients may have had very traumatic experiences within the health care system or within educational institutions, so meeting in a hospital boardroom or at a university office may not be considered a safe space for some. This means talking to communities about where the best location is to come together.

Interpersonal safety is also incredibly important. Oftentimes when a group meets for the first time, we like to go through the following questions:

  • What does safety mean to me?
  • What does safety look like to me?
  • What does safety feel like to me?

Responses could be as simple and straightforward as “people listening and not interrupting.” The results of the discussion can become guiding principles for coming together, which can then be reviewed before each meeting.

Ensure People Feel Supported

Ask patient partners how you can help meet their needs.

  • For someone whose first language is not English, this might mean a translator will be required.
  • For someone living with a visual impairment, this might mean visual aids or equipment will be required.
  • For someone living with a hearing impairment, this might mean audio aids or someone who can do American sign language will be required.
  • For someone living with a physical disability this might mean mobility aids or the presence of a care attendant might be required.

Also an absolute must is fair compensation for patient partner contributions of time, knowledge and energy. Even if researchers around the table are not getting directly paid for their involvement in the project, they are hoping to advance their careers and leverage their earning power. Similarly, community partners should not be expected to volunteer their time. Further, expecting patient partners to volunteer their time limits the diversity of perspectives you will be able to engage — essentially only those socially and economically secure enough to give their time for free will take part. Transportation costs, parking fees and childcare are other considerations to keep in mind. Try to make sure that any of these fees or expenses that may be incurred by patient partners is paid up front, or paid promptly, so no one is ever left out of pocket.

Finally, it’s important to make sure patient partners on you research team who may be helping you to conduct research have access to the same resources as other members of the team, including: work space; meeting spaces; library resources, access to a computer and printer, etc.

These are only a few of my tips and tricks. What about you? What advice do you have in regard to patient and public engagement in health research?

About the Author

Carolyn Shimmin (@CarolynShimmin) is the Patient and Public 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.