When it comes to advocacy, patient leaders are essential and provide a unique perspective. Whether representing the needs of the community, contributing valuable insights, or inspiring new ideas, patient leaders’ impact is always transformative. At Health Union, we’re passionate about bridging the gap between industry and patient leaders, so that we can transform healthcare and create better outcomes and a more equitable future for patients around the world. Thanks to the work of our Patient Leader Network, and patient leaders everywhere, many organizations are working to increase the inclusion of patient voices, and collaborate more regularly with the patient community. Still, there’s more work to be done to educate organizations on best practices with it comes to patient partnerships.
With the help of our network, we’ve created a guide for organizations to work more compassionately and effectively with patient leaders.
1. Recognize The Value of Patient Leaders
Patient leaders deserve to be compensated fairly and appropriately for their work. As individuals living with a health condition they’re immersed in their community, and they’re experts on the patient experience. They deserve to be compensated as such! As patient leader Natalie says: “We’d love to help and contribute, but we deserve to be compensated for our expertise.” Given the value and effectiveness of working with real patients, it’s crucial to seem them as partners, partners that deserve to be compensated. The work of patient leaders takes time, energy, and effort. Many patient leaders are already navigating a busy schedule of personal responsibilities, healthcare responsibilities, and more. It’s important to compensate patient leaders fairly for their expended time and unique expertise.
2. Patient Leaders Are At the Heart of Your Organizations Efforts
As representatives of their community, patient leaders are experts on the needs, values, and opinions of health communities. Patients are more than just their insights. Patient leaders live and breathe the patient experience – from navigating medical appointments to speaking at healthcare conferences and beyond, progress and advocacy in healthcare wouldn’t be possible without the patients who are advancing the cause every day. As patient leader Maria says, patient leaders “are the salt of the earth …without their efforts, compassion, and dedication there would be no patient advisory boards around the country from private to gubernatorial organizations nor would there be patient and research advocates participating in numerous projects and research and helping others prioritize needs of families and patients.”
A successful healthcare organization never fails to keep patients, their stories, and experiences central to their mission. When a patient leader contributes a piece of advice or an idea around an upcoming material, resource, or piece of content, it’s coming from a place of authenticity and honesty. Put more simply, as patient leader LeTysha says, it’s important for organizations working with patients “To listen to them and take their advice and concerns seriously!” Organizations working with patient leaders should treat it as an equal partnership, and remember that working with patients is a unique opportunity, and also a privilege.
3. We’re All Working Toward a Common Goal
Organizations and patient leaders are two sides of the same coin. Sometimes, it can be easy to let perceived divisions between patients and healthcare organizations get in the way of progress. At the end of the day, organizations and patients alike are working towards better resources and better outcomes. The future we’re all working toward can only be achieved when we work together, and listen to all stakeholders. Organizations provide large-scale outlets for patients to connect and serve as hubs for community support. In turn, patient leaders provide a personal connection to health communities, empowerment for fellow patients, and impactful insights. Patient leader Joel eloquently states: “We want the same thing! Patients’ voices can tell you far more than any whitepaper, marketing team or gap analysis. Patient leaders are not extra red tape, but the most underused resource in healthcare. Lean on us and we can all achieve the same benefits for the patient together.”
Moreover, patient leaders can speak to the needs of their communities, because as representatives, they have vast shared experiences with other patients. As patient leader Molly says: “Patient leaders will help you meet the needs of your patient population in a way qualified healthcare professionals cannot. The patient perspective will result in better care, products and therapies that patients actually seek out and use if patients were in mind during the entire process. As a patient leader I am able to help direct the product development to better meet the ‘end user’ or ‘consumers’ needs because I am a patient who would be the end-user. Consulting a patient leader is critical to maintaining relevance in the ever-changing world of healthcare.”
4. Accommodations and Flexibility Are Key
Patient leaders want to show up, and contribute to transforming healthcare, but given that they’re navigating illness themselves, flexibility and accommodations are key. Accommodations are more simple than you might expect, and a little flexibility goes a long way. As patient leader Lisa states: “Make involvement simple and have a variety of options for your patient leaders to become involved with. Patient leaders want to help.” Providing patient leaders the opportunity to get involved with your organization’s work is more than just a meaningful gesture, it also elevates your organization’s resources by emphasizing the authentic lived experiences of patients.
Put another way, patient leader Rick says “Organizations should be aware that health advocates are passionate because they often have the lived experience of that condition. For them, diabetes, cancer, HIV, etc., is more than just an academic pursuit. We don’t see ourselves as “patients” but as individuals. We offer an opportunity for organizations, care providers, and clinicians to understand their work from a different perspective.” In order to benefit from the passion, wisdom, and expertise of patient leaders, organizations need to be willing to create space to connect and collaborate with patients in an accessible manner. Virtual options, a willingness to be flexible, and respect for the patient experience are all foundational for a successful partnership between organizations and patients.
5. Patients Are People Too
As an organization, it can be difficult not to think about healthcare, and health in general from a high-level overview. With so many metrics to track, campaigns to run, and events to organize, it’s easy to get swept up. It’s important to remember that health is an incredibly personal subject, and millions of individuals around the world are living with conditions that are challenging every day. It can’t be said enough. Patients are more than just patients, they’re people too. They have individual dreams, experiences, and responsibilities that vary from person to person. Yet, all patient leaders are connected by the desire to uplift their fellow patients and create a better future for patients worldwide. Without patient leaders, there would be no support for individuals battling difficult conditions and no community empowerment. Organizations working in health spaces in any capacity should center patients and focus efforts on directly benefiting patients.
As patient leader Melissa says: “Every day, we work with patients who share our illness, and so, we understand and can convey to you details and nuances about the diagnosis you might otherwise not see. We share our own experiences and those of our community members in the hope you will better understand our needs and the contributions we can make toward advancing knowledge about our care.”
If you’re looking to make an impact with your organization, explore our Patient Leader Network to connect with patient leaders and discover new opportunities.
A special thanks to the patient leaders who contributed to this resource, S.E. Olson, Kate Mitchell, Maria De Leon, Joel Nelson, LeTysha Montgomery, Jennifer Collins, Natalie Abbott, Rick Davis, Molly Dunham-Friel, Jenny Jones, Fred Pieplow, Rick Guasco, Genetic Diabetic, Melissa Adams VanHouten, Amy Englert, Suzanne Gauvreau, Lisa Deck, Daniel G Garza, Derek Canas, and Amanda Greene.