Abstract
Patient advocacy is essential for progress in healthcare to improve clinical practice and treatments, but advocacy is neither well understood nor supported. Advocacy work is often placed on those already negotiating social burdens, caregiving, and diagnoses. The Advocacy Exchange (TAE) rose as a community-led, public–private partnership, becoming the largest cross-cultural, cross-therapeutic, global network of health-related advocates. TAE is co-created with leaders from the nonprofit, healthcare, governmental, and business sectors as an innovative accelerator of advocacy–industry relationships, integrating patient experience into healthcare systems and supporting individuals on advocacy journeys, whether they are 3 days or 3 decades postdiagnosis. Across 4 years of online gatherings, resource sharing, and partnership-matching, TAE has reached 77,500 website visitors from 120 countries with 7100 registrants representing more than 325 organizations. Forty-five live sessions co-created with advocates show robust community participation for sessions on health equity, patient dignity, and patient voice, leading to 50-plus hours of YouTube content viewed 97,000 times with 15 million social media impressions. Survey data show an engaged community grateful for peer connections and collective problem-solving. Lessons learned can serve to accelerate public–private partnerships and amplify patient voices. Themes include: (1) individuals being forced into advocacy by need; (2) consistent presence of barriers and discrimination in healthcare; (3) importance of discussing hard subjects; (4) need for neutral meeting spaces; and (5) opportunities to bridge industries and advocacy for progress. TAE will broaden its umbrella by building more partnerships for community members, targeting access and equity in healthcare, and shaping the understanding of advocacy.
Keywords
Introduction
Patient advocacy often drives progress in healthcare, though advocacy itself is not yet conceptually well understood. Advocacy fosters innovation by bringing lived experiences and people's voices to clinical practice, treatment progress, and medicine development, in addition to engaging in economic, political, and policy aspects of healthcare.1,2 A general lack of resources adds complexity, often placing advocacy work on individuals negotiating diagnoses and caregiving; further, advocacy burdens can fall on people from historically marginalized backgrounds.3,4 Complexities such as these diminish public health and thus need countervailing initiatives to boost well-being outcomes.5,6
This lack of conceptualization, resources, and equity drove The Advocacy Exchange (TAE) as a needed longitudinal, transformational approach to community engagement and coalition building. TAE rose as a community-led partnership, becoming the largest cross-cultural, cross-therapeutic, global network of health-related advocates. Founded by Bristol Myers Squibb and Gryt Health, TAE is co-created with leaders from nonprofit, healthcare, governmental, and business sectors, using a model of equality between partners, shared commitment to objectives, and mutual stakeholder benefit.7,8 The approach accelerates advocacy–industry relationships, integrates patient experience into healthcare systems, and supports individuals on advocacy journeys, whether they are 3 days or 3 decades postdiagnosis. 9
Description of the Program
Patient-directed TAE launched to build capacity, share lessons learned, and create mutual support when advocates globally reported feeling isolated and strained. In April–May 2020, 90-plus advocates shared with TAE organizers how COVID-19 affected community engagement, finances, mental health concerns, participation in clinical trials, and systemic access to care. Those conversations framed 10 sessions on leadership skills, policy development, and participation in healthcare-related research and led to the current relationship-generating incubator.
Sessions to help foster relationships among advocates and professionals continue to grow from community requests and timely advocacy-related events. Additionally, end-of-session surveys, an annual survey, and individual dialogue with partners shape opportunities to create connections among participants. Examples of community-driven focus areas include “Resilience: Leading in a Reset World” or “Giving Voice to the Often Voiceless: Advocate-led Research Creating Change.” Sessions typically include a plenary discussion with experts, discussion of attendee questions, plus text-based chat with peers to help foster connections.
Building from year 1, participants started working groups about the future of advocacy itself, focusing on patient voice as well as the influence of racial and ethnic disparities on access to care. In year 3, the website home for TAE improved to manage shared resource files from members while incorporating search functions for session topics, speakers, and exhibitors, so content can be found as advocates prefer.
Evidence of Impact
The aim of this manuscript is to evaluate TAE's impact in its first 4 years as a partnership to offer lessons for others interested in launching advocacy-support networks. The guiding research question of this work asks: “What effects is TAE having on its members and their advocacy work?” Evidence of its impact and the depth of relationships it fosters comes from reach, participation, and qualitative and quantitative data-gathering during 4 windows between May 2020 and August 2024. The program's reach includes 77,500 site visitors from 120 countries. About 7100 individuals registered with the community (25% outside the United States), representing 325 organizations.
Forty-five live sessions co-created with advocates show robust community participation, drawing 5500 audience members. Almost 90% of sessions focused on health equity, patient dignity, and patient voice, creating 50-plus hours of YouTube content viewed 97,000 times with 15 million social media impressions.
Qualitative and quantitative assessments done by Gryt team members 10 show community appreciation for the programming as well as the chance to be in a collective conversation about the future of advocacy, driven by the opportunity to learn from cross-disease and international peers (see Table 1). Community members particularly valued the sharing of resources (eg, strategy documents, messaging plans, and volunteer training manuals) and the inspiration from hearing others’ experiences. Additionally, in interviews and open-ended items, respondents expressed gratitude for the opportunity to understand access issues across a range of communities and learn how to better partner with historically underserved communities, those affected by often-stigmatized health conditions, and less-funded advocacy areas.
Summary of Survey Data, 2020–2023.
Abbreviation: TAE: The Advocacy Exchange.
Actionable Insights
Lessons learned from TAE stem from in-session dialogue, surveys, interviews, online meeting chat, and shared resources, as analyzed by Gryt team members and vetted by community members. These ideas are offered to serve advocacy leaders as prompts for accelerating partnerships into deeper, more effective collaborations. Lessons from TAE can also help amplify the voices of patient experiences within healthcare, treatment development, and policy creation to foster transformational progress. Building from data presented in Table 1, as well as other comments from community members about their experiences, themes that may serve others seeking to bolster advocacy include:
Forced advocacy: “No one prepared me for this” and similar ideas are common sentiments in the community's dialogue and responses to open-ended surveys; many share about not being fully aware of being advocates, often reporting being forced into advocacy by their needs or caregiving, and thus not necessarily prepared for the work. Considering this challenge, a developmental focus is required for the future of advocacy and similar coalitions by prompting tangible skills in people engaged in supportive activities, including how to approach funding conversations with foundations and medical-device makers, as well as how to engage in political action relevant to treatment coverage and reimbursements, to name a couple of examples. Additionally, practical leadership skills are needed, such as learning to organize localized cross-disease coalitions and technologically managing volunteer cohorts to be primed for collective action. Costs of treatment, emotional labor, disclosing medical needs, and working to change policy can overlap across experiences, making collaboration impactful. Discrimination's many forms: Patients often do not know that they are experiencing barriers or discrimination; they just know it does not feel right, only to realize later that an interaction was inappropriate. In the moment, advocates can be so focused on healthcare or in shock that they are unsure how to respond to unacceptable interactions, so collective sharing about these issues and conversation–preparation practice may help individuals address these situations in real time. Barriers and discrimination in healthcare are regular and prominent experiences for advocates, driven by known factors from diagnosis and economic class to culture and self-presentation. Intersectional complexity often prevents individuals from advocating for what they would like because participation costs are high. Engage hard subjects: Taboo topics are essential discussion subjects in capacity-building and can foster community because difficult subjects handled with care create space for authenticity. In sessions about cultural humility and lived experiences, for example, participants expressed appreciation for space to be heard and feel acknowledged, as that can be scarce for people with rare diseases or marginalized identities. Coalitions can practice safely having these conversations and offering mutual support so as to learn from others’ experiences and collectively consider ways that patient experiences can support progress. Neutral convener for community-driven leadership: Exemplified by the community-led work driving TAE, advocacy leadership needs neutral spaces for collective listening so programming can grow alongside participants’ needs. For TAE, this means regular and differential data-gathering for feedback, intentional speaker invitations to amplify lived experiences, language translation where possible, and use of technology appropriate to advocates’ journeys. Materials are presented through several options for accessibility, such as live sessions, recordings, and written resource sets. Other conveners can adapt this philosophy to ensure multiple patient voices are intentionally included in community actions by inviting those not usually heard from or often marginalized and by making sure any firm positions derive from community consensus, not leadership choices. Industry opportunities: A bridge between advocate communities and healthcare-connected industries offers opportunities across complementary skillsets such as resource procurement, communication with communities, effective listening, and policy development. Innovation across domains requires multilevel work by several actors, so progress exists in integrating, for example, the lived experience of advocates with the innovative treatment expertise of pharmaceutical organizations and the policy knowledge of healthcare-practitioner trade associations. Coaching on how to approach conversations for these partnerships could benefit future advocates so that outreach fits institutional norms and that requests fit reasonable possibilities in asking appropriate organizations for specific support.
Practical Recommendations
Silo-breaking efforts can build the future of advocacy by:
upskilling those seeking leadership; helping address discrimination and access issues; amplifying necessary conversations around hard subjects; providing neutral ground to convene; offering links to health-professional industries with lessons about navigating systems; and stimulating connections among advocates that might not otherwise develop.
The future of TAE will broaden with more partnerships for community members, targeting access and equity in healthcare, and shaping the understanding of advocacy as survivorship has done for almost 40 years. 11
Conclusion
As the largest cross-cultural, cross-therapeutic, global network of health-focused advocates, TAE offers an innovative, comprehensive approach to capacity-building plus improvements in policy formation, medicines development, and inclusion. By collaborating, building community, and sharing across diagnoses, countries, and experiences, TAE offers an example for how boundary-crossing efforts can accelerate innovation.
Footnotes
Acknowledgments
The authors would like to thank the Gryt Health team, who led the initial advocacy-sustaining programmatic work during COVID, Neil Bertelsen, Gary Nolan, the BMS Global Patient Outreach team, and particularly the countless patient advocates, patients, and caregivers who helped the platform be a place for connection and better advocacy.
Data Availability
Data are available upon request from the first author and will be shared pending completion of a nondisclosure agreement.
Declaration of Conflicting Interestst
The authors declared the following potential conflicts of interest with respect to the research, authorship, and publication of this article: Laudy Robinson and Jasmine Greenamyer are employed by Bristol Myers Squibb. David Craig, Katie Stout, Eileen Shannon, and Brad Love are employed by Gryt Health, where Sheila Thorne is a board member. As an Industry Insights article, the authors note that several are employees of a pharmaceutical company and the others work in healthcare consulting, all of which would count as financial conflicts on the Sage page linked above.
Ethical Considerations
Ethical approval is not applicable to this article. It is considered nonhuman-subjects research by the Institutional Review Board at the University of Texas at Austin and is covered under data-use agreement UTAUS-DUA00001286.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and publication of this article: This work was supported by Bristol Myers Squibb Global Patient Outreach and Gryt Health. Employees of BMS helped shape the content of The Advocate Exchange, along with employees of Gryt Health. Gryt Health employees were responsible for assessment design, data collection, and data analysis.
Other Identifying Information
No other identifying information is relevant to the anonymity of a specific author.
