5/08/2023
Healthwise Communications Team
As a nonprofit organization with a mission to help people live healthier lives, Healthwise wants to create health education that inspires people to advocate for themselves—particularly anyone experiencing inequities in the healthcare system. One thing that helps us create effective education is listening to patients and community members. By organizing consumer advisory boards (CABs), we can learn about patient experiences, gather feedback about our health education materials, and understand perceptions about consumer health information needs.
We recently partnered with Grapevine Health, a digital health media organization creating culturally appropriate health content for underserved communities, to convene a CAB on maternal health. We wanted to understand how women who were recently pregnant experienced healthcare during and after their pregnancy and to discuss barriers they encountered obtaining quality healthcare services. This feedback is critical because, in the United States, women of color experience disproportionately poor maternal health outcomes.
We collaborated with Savvy Cooperative to recruit CAB participants. Participants were women of color who had received maternal health care covered by public benefits, such as Medicaid, in the last three years. We invited them to review Healthwise’s maternal health education content and offer reactions and suggestions for improvement.
Feedback and perspectives from CAB participants were varied, and although each woman’s experience was unique, there was consensus that most people had:
One participant said: “…it's so important that you guys are doing this [advisory session] because it makes me feel like there is hope and people are out there trying to give us a voice. Because for the most part, we don't feel like we have [a voice] and we must advocate for ourselves all the time.”
Read on to hear from Dave Foster, Healthwise’s Senior Director of Consumer Strategy and Insights, and Dr. Lisa Fitzpatrick, Grapevine Health founder and CEO, about how health education can support people to advocate for their health and appropriate healthcare.
Q: I listened to the Tradeoffs Podcast to learn a little about Grapevine Health, but for those who aren’t familiar, can you tell me about Grapevine Health and how it got started?
A (Dr. Lisa Fitzpatrick): I started Grapevine Health because people from underserved communities, particularly Medicaid patients, need health literacy support and are often omitted from digital health innovation. They often need support to understand health instructions or how to navigate healthcare. In the Black community, trusted messengers are critical. I wanted to use technology to deliver relatable, trusted health information for underserved communities. We collect patient insights and use them to create video content enabling us to serve as a bridge between the health system and the community. We are identifying partners including insurance companies and health systems to support them to better engage people in their healthcare.
Q: How is consumer feedback important when developing content?
A (Dr. Lisa Fitzpatrick): To make content relevant, you must be willing to listen and respond to people’s concerns and desires, which can be uncomfortable for healthcare organizations because what they hear might be counter to the systems and infrastructure they’ve established to serve patients. This makes it difficult, and maybe even painful, to relinquish old approaches and pivot to a new strategy.
A (Dave Foster): Healthwise aspires to incorporate a research methodology, participatory research. Participatory research involves the community in the process. Patient engagement means you must talk to consumers before and while producing materials. And it can be difficult. Not many patient content organizations do it, but Healthwise is very committed to participatory research.
Q: How did this maternal health CAB form and what were the goals?
A (Dave Foster): Healthwise wants to be a trusted source of health information for all people; however, we don't have a direct relationship with the people we ultimately serve. While we conduct user testing to develop our content and products, it's not the same as asking patients directly about their experiences. We want to intentionally strengthen our relationship with consumers to make sure we meet their information needs. This forum helps us discover some of that information. Grapevine Health has similar values around using health literacy to help people from underserved communities and they’re doing a great job cultivating a direct relationship with consumers and patients.
Q: What were some of the findings from the Consumer Advisory Board that are beneficial to both Healthwise and Grapevine Health?
A (Dr. Lisa Fitzpatrick): The biggest thing for me is that it validates most of the information we’ve already heard in the community about health information needs, the health system navigation needs, and the racism and bias patients are encountering in the healthcare system.
A (Dave Foster): It showed that people experience mistreatment and that mistreatment impacts their health negatively. This probably isn’t news to people who experience discrimination. But it's an important reminder for Healthwise to understand and address discrimination in our health education like any other risk factor that people might face. And we must work with people who are experiencing discrimination to create the content and get the language right. The other aspect is encouraging people to advocate for themselves.
We had positive feedback and constructive criticism about our maternal health education. However, many CAB participants said they had never even received health education—so that may be one of the biggest issues. We must advocate for informing patients.
Q: What are the next steps for Grapevine Health and Healthwise following the CAB?
A (Dr. Lisa Fitzpatrick): We must ensure decision makers have access to this information. First, because we need to ensure they are well-informed and cannot say they were not aware. Second, because solutions must flow from data and information.
DEI and health equity are hot topics right now. Sadly, it seems many health systems resort to training or establishing DEI committees when the solutions must be much more systemic and embedded throughout the organization.
I also think we must ensure patients access the information they need to advocate for themselves. The frequency with which mothers of color feel unheard in healthcare is disheartening. Health education focused on self-advocacy—such as when to speak up, knowing which questions to ask, or what to look for to ensure a healthy pregnancy—is vital to support anyone experiencing a pregnancy, but most especially women of color who most often suffer maternal health disparities.
Finally, many people feel alone and don’t realize many others are also experiencing poor health outcomes and discrimination in the healthcare system. The knowledge that you are not alone can be powerful and inspiring, which may motivate a person to speak up when they feel something's not right.
A (Dave Foster): There are two things: making sure Healthwise content encourages people to advocate for the right care, and ensuring that Healthwise makes it easy for clinicians to provide the information to people they're serving. We’re going to advocate for clients to provide this type of health information to all their patients and members because we're seeing that it’s not happening.
Organizations need to make the most of the healthcare services they provide to patients experiencing inequities by also making sure those patients are informed. If you’re working on health equity and you're not informing the patients you're trying to provide services to, you're missing a big piece of the solution. For example, if you provide transportation services and someone goes to an office visit but doesn’t understand what happened during the visit, that's a waste of everyone’s time and resources.
Q: Do Healthwise and Grapevine Health have plans to partner on future CAB engagements?
A (Dave Foster): Yes! Healthwise and Grapevine Health are working well together. So, I look forward to future collaborations. We want to learn what causes people to lose trust in the healthcare profession and about the misinformation problem. Both have gotten bad, and we want to learn how to help our clients be that trusted messenger that Lisa mentioned earlier.
A (Dr. Lisa Fitzpatrick): We hope there's a long relationship between Grapevine Health and Healthwise because our missions are so aligned. And we hope we can continue to collaborate to ensure culturally appropriate and supportive health information is available for underserved communities. CABs are worthwhile, and I hope we can take this on the road and hear from many more people!
Q: Coming full circle back to the consumer, what is your one message to consumers?
A (Dave Foster): I think consumers need to hear that they are the expert on themselves, and if they sense something is not quite right, it's important they help their doctor understand what's going on and what they think they need.
Community Advisory Boards are just one of the ways Healthwise seeks to hear from patients about their healthcare experiences in order to guide our education. To find out more about partnering with Healthwise on community-based, mission advancement projects, contact us.
*We are grateful to Savvy Cooperative for their partnership in this effort.