The Power of Stakeholder Engagement: Improving Patient Supports through Stakeholder Collaboration

Written by: Stephanie Brooks and Sabella Yussuf-Homenauth

It doesn’t matter how many times you’ve experienced it, pregnancy can be both exhilarating and daunting simultaneously. Experiencing the biological process is one part of the journey but there is also a new relationship you build with healthcare during pregnancy. There are numerous checkups and routine tests that encompass pre-natal care. One of those important tests looks for gestational diabetes. Members of our team here at KT Alberta recall stories of waddling to a lab to take one- and two-hour glucose tests, drinking dreadfully sugary, bright orange drinks required for the tests, and waiting for subsequent blood tests.

Some received false positives and went through the process twice. Some were indeed diagnosed with gestational diabetes. For any mom or mom to be, it is an anxiety-provoking experience to go through these types of test as your head becomes flooded with thoughts like: What if I fail the test? Have I done anything wrong? If I fail, what comes next? What will happen to the baby if I have gestational diabetes? What do I even know about gestational diabetes?

GESTATIONAL DIABETES STARTS WHEN YOUR BODY IS NOT ABLE TO MAKE AND USE ALL THE INSULIN IT NEEDS FOR PREGNANCY. WITHOUT ENOUGH INSULIN, GLUCOSE CANNOT LEAVE THE BLOOD AND BE CONVERTED INTO A SOURCE OF ENERGY. INADEQUATE INSULIN LEADS TO AN ACCUMULATION OF HIGHER THAN NORMAL GLUCOSE IN THE BLOOD (HYPERGLYCEMIA).

Dr. Roseanne Yeung, a clinical endocrinologist and assistant professor at the University of Alberta (U of A) and a member of the Alberta Diabetes Institute, was moved by the questions pregnant women have about gestational diabetes mellitus (GDM) and how to reduce stress associated with diagnosis and living with the condition. Her team, including research assistant Jamie Boisvenue and patient partner Jessette Apao, presented their work at this year’s Alberta SPOR SUPPORT Unit (AbSPORU) Summer Institute and received the best research poster award (Congratulations!).

When we met Jamie, Jessette, and others in Dr. Yeung’s team at the Summer Institute, we were very impressed by their terrific stakeholder engagement and use of co-creation methodologies for this project. This week’s post is longer than normal but that’s because, when we sat down to interview Jamie and Jessette about their winning poster, they ended up giving us a masterclass in stakeholder engagement and KT tool co-creation. We hope that you learn as much from their story as we did!

Phase 1: Learning about the current state of GDM education

The first step towards improving GDM education was to gather feedback from women about their experiences with the GDM testing, diagnosis, and resulting education. To do this, the research team visited 5 GDM clinics across Alberta over 9 months to survey women about their perspectives on GDM and the educational resources they received.

Normally, once a woman is diagnosed with GDM after the routine sugary drink test, she is booked to attend a three-hour class and meet with a specialist, nurse, dietician, and nutritionist. Jamie learned from participants that they received relevant and necessary information in a GDM class but the volume of required reading was overwhelming to some. Furthermore, women found that information varied depending on the source (internet resources, different healthcare professionals at different sites).

Jamie: "We found that women generally want more information on healthy eating strategies, meal planning, and physical activity which is interesting because this was already the essence of GDM classes. We found that they wanted that information in a central source that was easily accessible to review and expand their knowledge in those areas."

Phase 2: Stakeholder Engagement & Deliberative Priority Setting

This is when the team’s thoughtful strategy for stakeholder engagement and KT tool co-creation took off. Jamie and the team involved stakeholders from every level of GDM education, including women currently and/or previously living with GDM, partners, spouses, GDM clinical specialists, researchers, dietitians, and registered nurses.

Jamie: "One of the most important things in engaging health providers involved meeting with the teams at each participating GDM clinic to talk about who we are as researchers and provide regular project updates. We also had collaborative support from other researchers including Dr. Padma Kaul and Dr. Edmond Ryan. I think the most surprising stakeholders were men, whether they be fathers, husbands, friends, or any other relation. The accessibility of information would have enabled them to better support their loved ones."

It was in this stakeholder engagement phase that Jessette Apao became involved as a patient partner Her experience at her GDM clinic was that there was lots of information but also opportunities to improve the experience for others.

Jessette: "It was [at the GDM clinic] that I was asked if I would be willing to work with the U of A on this project because of my own experience. I was so happy to contribute to this project and to assist other mothers who were in the same predicament as me. That is where our collaboration started. I know what it was like to have no support and knowledge, so I was more than willing to be part of this process and to contribute to helping other mothers and their families."

Jamie: "Getting women with GDM, families, and providers all in the same room was key for establishing that environment for co-creation. This was the most empowering part of the process because we planned things and arrived at the final product for the research together in an iterative fashion together."

“Getting women with GDM, families, and providers all in the same room was key for establishing that environment for co-creation. This was the most empowering part of the process because we planned things and arrived at the final product for the research together in an iterative fashion together.”

The team used a deliberative priority setting process , an approach promoted by Canadian Institutes of Health Research to help identify important research needs. In deliberative priority setting, a stakeholder group works together to identify key priorities around a particular research question and then ranks the priorities according to importance. Armed with the results of this process, the team began focusing on solutions that mattered to GDM health providers, women with GDM, and their supporters.

Jamie: "It was one of the nurses who participated in the collaborative sessions who pointed out that we could address all of the priority areas by building a website. This iterative collaborative process was repeated with all the stakeholders before the collective choice to establish a website was made."

Phase 3: Collaborative Co-Creation of Their Educational Website

The team struck a bit of luck in their website development as there was already a website owned by diabetes endocrinologist Dr. Edmond Ryan that needed updating. Dr. Ryan endorsed co-design of the website in collaboration with the stakeholders to make it into a user-friendly and accurate health information source. Through co-creating the new website, the team was able to incorporate important content for expectant families using a people-centered design. To update the website, the team partnered with Swift Digital who also provided an in-depth user experience analysis of site behavior and usage.

Jamie: "The site focuses on all types of diabetes, not just GDM. The resource page under the GDM arm is my favorite section of the site because it provides all types of information that expecting mothers/ parents might need: learning how to breast feed, places you can go and get baby clothes, and even places you can reach out to if facing domestic violence. Very important things that often get overlooked when facing the burden of GDM can often compound the challenge of managing GDM. We also found that the standard language used in clinic by health professionals can negatively impact a patient’s emotional experience and interactions while receiving care. For example, a woman would be told they failed their glucose test. This is standard medical language that professionals use all the time but takes on a different meaning for a new mother trying hard to get her sugars under control. That was not language we want to endorse and so we made sure to consider this in the design of the website. If you visit diabetes-pregnancy.ca , you will see that it is developed with person-first language in mind. All the questions are posed in the way a women managing GDM would ask: Why me? Why now? What about my baby? What can I eat, how do I exercise? Where do I go for more resources?"

The site contains information in various formats such as videos, anecdotes, and helpful instructions (e.g. for checking blood glucose or taking insulin). However, the site is meant to complement, not replace, the education or medical advice on GDM that is received in a clinic. An important priority identified by the stakeholder group was the value of in-person consultation. The site was developed to reduce stress and information overload by offering pregnant women and their partners various methods of connecting with, absorbing, and learning about GDM before and after attending a GDM education class .

Phase 4: Engaging the Broader Community

Jamie: "The fourth phase focused on designing and the website framework and we came up with some mockups for the site. Last October we had an opportunity to pitch the newly designed site to the Edmonton Zone Diabetes Quality Council. There were about 50 people at the retreat of which consisted of physicians, nurses, psychologists, social workers, LPNs, unit clerks, unit managers, and it was very well received. After showing health providers what the site would look like, I asked the audience ‘how many of you after seeing this would recommend the site to your patients?’ and every single person in the room put up their hand. It was really encouraging."

“After showing health providers what the site would look like, I asked the audience ‘how many of you after seeing this would recommend the site to your patients?’ and every single person in the room put up their hand. It was really encouraging.”

Reflections on Deliberative Priority Setting and KT Tool Co-Creation

We asked Jamie and Jessette to reflect on their experiences in this study. Both had very interesting feedback on the advantages of the deliberative priority-setting approach and co-creating the website. From a researcher’s perspective:

Jamie: "It was an interesting experience. Being a male and not able to bear children, you can imagine how intimidating it might be to do a research project on pregnancy and GDM in a room full of pregnant ladies. This collaborative process was empowering because relying and trusting the process allowed me to connect with women. For all of us, scientists, researchers, health professionals, patients, males or females, we were able to identify the common interest and work together toward our goals through sharing our stories and experiences. If anyone is to undertake a project like this, my best advice would be to understand that sometimes your ideas don’t go in the direction you had in mind and the best thing to do is to trust in the process and be flexible."

As a busy parent Jessette found the structured nature of deliberative priority setting both practical and meaningful.

Jessette: "I found [the team] very structured and well organized. Schedules were standard and provided in advance so that I could make the necessary arrangements. I have three children, so I am not so flexible but I was willing to get whatever knowledge I could get from the study. The survey part of the process was good for organizing what were all our concerns, what were our needs, what were the gaps of the current tools/ website. We were able to express things that really matter to us and this informed the design of tool. My experience with Jamie and Dr. Yeung empowered me because I know what I had faced and used it to contribute to empowering others. I was able to psychologically connect with other patients, and this is important because of the psychological effect that comes with this condition. It is encouraging to know that there are studies being done and that [patients] can contribute."

“My experience with Jamie and Dr. Yeung empowered me because I know what I had faced and used it to contribute to empowering others... It is encouraging to know that there are studies being done and that [patients] can contribute.”

What’s next?

The team’s stakeholder engagement doesn’t stop there. They plan to do a final upcoming phase to evaluate the new site with those who helped to design it.

Jamie: "It’s about going back to women with GDM and their clinicians and asking ‘is it working and how can we improve it if it is not’. There has also been some change over in staff and with new minds come new ideas so bringing things back to the drawing board will help GDM health services in Edmonton innovate and grow. We also want to translate the site content to other languages and dialects – Tagalog, Punjabi, French, Indigenous languages- especially since some ethnicities are more susceptible to GDM."

Thanks so much to Jamie and Jessette for sharing their story with KT Alberta! We’re always inspired when we get to hear about such strong work coming from our home grown dedicated KT community members!