Lessons learned: Building a coalition to advance equity in cancer and mental health care

1 |. INTRODUCTION

Individuals with serious mental illness (SMI), including schizophrenia, bipolar disorder, and major depressive disorder, are significantly more likely to die from cancer compared to the general population, partly due to inequities in cancer care.¹ Irwin and colleagues (2014), informed by the Social Ecological Model, defined multilevel barriers to cancer care for individuals with SMI, including pervasive mental health stigma, patient factors (lack of trust), clinician factors (inadequate training), and healthcare system factors (fragmented mental health and cancer care).^2,3

Psycho-oncologists cannot address these multilevel barriers within the silo of the academic cancer center. Therefore, we (a psychiatrist/health services researcher and social worker embedded in the Massachusetts General Hospital [MGH] Cancer Center) partnered with community mental health clinicians, a mental health advocacy organization, the state department of mental health, and individuals with lived experience to develop a stakeholder coalition to combat this inequity: the Engage Initiative. We received funding from the Patient-Centered Outcomes Research Institute (PCORI), Department of Mental Health, and institutional funding from the MGH Cancer Center.

The Engage Initiative aims to promote equity in cancer care and research for people with mental illness through clinical care, research, education, advocacy, and policy change. The Engage Initiative is informed by principles of person-centered care, community partnership in person-centered research, and a framework for advancing health equity coalitions.^4–6

The Engage Initiative was founded in 2017 and has steadily expanded to include more than 750 members with national and global reach from 2018–2021. Here, we share five key strategies to create and sustain coalitions designed to advance equity in psycho-oncology research and care.

2 |. ENGAGE DIVERSE STAKEHOLDERS AND SHARE NARRATIVES THAT MATTER

To establish a coalition, “a formal association of organizations and individuals that collaborate on a common goal,” stakeholders need to convene with a shared purpose, urgency, and enough established trust to collaborate across sectors.⁶ First, we identified individuals and organizations who shared our commitment to closing the cancer mortality gap for individuals with SMI and needed to be included to drive change.

Consistent with community engagement principles, we invited individuals with lived experience of mental illness and cancer, caregivers, and advocates to partner in developing the Engage Initiative.^5,7 To address fragmentation at the systems level, we engaged colleagues in mental health and cancer care across disciplines and institutions who had collaborated with us to deliver care. We also invited leaders of government agencies, advocacy organizations, and state policy makers.

Finally, we assembled diverse stakeholders for the first in-person Bridging the Divide Symposium to create an agenda for change. To combat stigma, we highlighted the narratives of individuals with lived experience, caregivers, and clinicians. The symposium fostered community and trust by treating attendees as equals (e.g., doctors collaborated with patients to lead trainings) and opening channels of communication between traditionally siloed stakeholders (e.g., mental health and oncology clinicians). Key outcomes included increased referrals for clinical care and research for adults with SMI and cancer, a population often excluded from clinical trials.⁸

3 |. ESTABLISH SHARED LANGUAGE, MISSION, AND INFRASTRUCTURE TO BUILD TRUST

Following principles of effective health equity coalitions, we established a shared conceptual foundation and language among stakeholders by facilitating conversations about discrimination faced by people with SMI.^6,7 Stakeholders committed to elevating the voices of people with SMI by featuring their narratives prominently in coalition events and media and partnering in academic presentations.⁹ Stakeholders pledged to using person-first language (e.g., “person with schizophrenia” rather than “schizophrenic”). To further build trust and address power dynamics among stakeholders, we created opportunities to collaborate outside of professional roles. For example, we conducted a photovoice campaign (a participatory research method that blends narrative with photography) about the urgent need to close the cancer mortality gap for people with SMI.¹⁰

Stakeholder Quotes.

“There is a community - colleagues full of spirit and resilience we can always turn to.”

“I am not alone in this fight for quality care.”

“It brought the community and hospital providers together.”

“There is a model here and therefore hope for other centers without one.”

To promote and sustain stakeholder engagement, we established a centralized infrastructure comprised of a Steering Committee and a Stakeholder Board, with regular meetings, defined responsibilities, and diverse stakeholder representation (see Figure 1). The Steering Committee provides strategic planning and spearheads dissemination, and the Stakeholder Board meets monthly to discuss priorities and track progress. To decrease financial barriers to participation, we compensate stakeholders for their time.⁵ In early meetings, stakeholders collaborated to develop a mission statement (“Together, we will ensure that mental illness is never a barrier to cancer care”) to guide the coalition’s research, clinical, educational, and advocacy priorities. By involving stakeholders in this foundational step of coalition development, we increased stakeholder ownership and buy-in, which are key to sustainability.^6,7

FIGURE 1.

Engage initiative infrastructure

4 |. CULTIVATE DIVERSE PARTNERSHIPS ACROSS SYSTEMS

Multi-sector partnerships are an essential mechanism for uniting groups toward a common goal.⁶ The Engage Initiative aims to build partnerships to bridge two fragmented systems: (1) community organizations and academic medical settings (e.g., National Alliance on Mental Illness-Massachusetts [NAMI] and MGH) and (2) cancer and mental health care (e.g., oncology clinicians and community mental health agencies). Additionally, to build coalition capacity at the systems level and promote sustainability, we included representation from government agencies, policy makers, hospital administrators, and payers in the coalition’s infrastructure (see Figure 1).

By convening stakeholders that rarely came together, the coalition was well-positioned to build bridges across systems. For example, oncology clinicians (medical, surgical, radiology, nursing) and mental health clinicians (psychiatry, social work, community mental health staff) collaborated to inform a novel integrated care model.⁴ A partnership with key champions at North Suffolk Mental Health and MGH Radiology led to research funding to improve cancer prevention and pilot same-day mammography for individuals with SMI.

5 |. BUILD STAKEHOLDER CAPACITY TO TAKE ACTION AND TRACK PROGRESS

After establishing infrastructure and partnerships, we focused on how to take collective action toward our mission.⁶ We organize an annual, stakeholder-led symposium that brings together 200+ individuals from 50+ organizations to raise awareness about the inequity in cancer care for people with SMI, provide training, and facilitate partnership-building. To increase accessibility and encourage diverse participation, all symposia are free, open to all, recorded, and shared widely.

During symposia, we conduct needs assessments to identify priorities and research gaps and develop a shared agenda for change. With these data we create specific, time-bound metrics informed by PCORI guidelines to track progress toward our mission (see Table 1).⁵ For example, to measure progress toward person-centered research, we track the number of established researcher-stakeholder collaborations and grant submissions.

TABLE 1.

Key outcomes, metrics, and progress

Outcome	Significance	Metrics	Progress
Web platform and social media	Supports collaboration among users and provides education	Web site and social media live Educational content posted	Engage Initiative Website Engage Initiative YouTube Channel Social media accounts: Facebook, Twitter, Instagram, Linkedln 942 email listserv subscribers; receive quarterly email newsletters
Annual symposium and educational seminars	Raises awareness and builds community	# of symposium attendees # of seminars	243 attendees at 2020 annual symposium 20+ additional educational seminars hosted by Engage Initiative to date
Researcher-stakeholder collaborations	Builds capacity to conduct PCORa	# of new collaborations	25+ new collaborations to date, spanning oncology organizations, mental health organizations, non-profits, payers, advocacy organizations, academic hospitals, and community networks
PCORa	Engages stakeholders throughout the research process to decrease disparities in cancer care for people with mental illness	# of grant submissions	20+ grant submissions spurred by the Engage Initiative and collaborators to date, spanning: Governmental agencies (e.g., National Institutes of Health, Department of Mental Health) Non-profit organizations (e.g., Patient-Centered Outcomes Research Institute; Merck Foundation, Alliance for Patient-Centered Care) Medical societies (e.g., American College of Radiology, American Cancer Society) Insurance programs (e.g., Harvard Risk Management Foundation [CRICO]) Community health centers and foundations (e.g., Kraft Center for Community Health, Catholic Health Foundation)
Multipronged dissemination plan	Facilitates dissemination and implementation of PCORa	Toolkit for dissemination practices	1st edition toolkit for digital health equity: Google Doc (ongoing incorporation of stakeholder feedback)

^aPatient-Centered Outcomes Research.

Additionally, we formed stakeholder-led workgroups to focus expertise and resources on stakeholder-identified priority areas and build capacity for leadership (see Figure 1). The Research workgroup focuses on expanding clinical trial eligibility criteria and decreasing data-sharing barriers, which informed a collaborative care trial funded by the National Cancer Institute (NCT03360695). Most recently, we created a Spanish-language workgroup focused on overcoming barriers to care and research participation experienced by Latino/as in the context of COVID-19.

6 |. CREATE TARGETED DISSEMINATION STRATEGIES AND FOSTER SUSTAINABILITY

The Engage Initiative aims to raise awareness about the inequity in cancer care for individuals with SMI and share best practices widely through social media, publications, community/state meetings, and national academic conferences. Stakeholders with lived experience and first-person narratives are at the center of dissemination activities.

We developed targeted dissemination strategies in partnership with collaborating organizations to increase reach. For example, we co-led advocacy workshops with NAMI-Massachusetts, which spurred meetings with state representatives to advocate for phone-based telehealth coverage to increase access to mental health care. During COVID-19, we prioritized dissemination and outreach to members who were disproportionately affected, isolated, and lacked access to care including older adults with SMI, people of color, and those without technology. We pivoted to a virtual symposium and focused on building trust using digital tools and virtual care.

The sustainability of the coalition and its diverse membership and partnerships relies on securing long-term funding.⁹ Our coalition pursues diverse funding sources including institutional, government, foundational, and philanthropic. Most recently, we procured a PCORI Engagement Award to support development of best practices in virtual engagement in clinical care and research for underserved older adults with SMI during COVID-19. We are confident the Engage Initiative will continue to grow its reach and can serve as a model for other efforts to advance equity in psycho-oncology research and care.

Key points.

• Engage diverse stakeholders and share narratives of those with lived experience

• Establish shared language, mission, and infrastructure to build trust

• Cultivate diverse partnerships to build bridges between fragmented systems

• Build stakeholder capacity to take action and track progress toward defined goals

• Create targeted dissemination strategies and foster sustainability

DATA AVAILABILITY STATEMENT

Data sharing not applicable to this article as no datasets were generated or analysed during the current study.