Program Notes

MS Ecosystem Framework Initiative

With our mission of Improving Lives Today, MSAA is continually striving to evaluate and meet the ever-changing needs and challenges of the MS community. Recognizing that important changes are necessary to meet the needs of underserved communities, MSAA has set out to: (1) identify and assess these needs, (2) gather vital input from individuals living with MS as well as healthcare professionals, and (3) develop personalized and targeted interventions for the MS community. These three phases make up the design of MSAA’s MS Ecosystem Framework initiative.

Phase 1: Conduct a National Needs Assessment Survey

Phase 1 began in October 2023 when MSAA conducted a national “Survey of Equity and Unmet Needs,” in both English and Spanish. The ecosystems considered included: (1) geographic regions where respondents reside, (2) how far respondents are from an MS center, (3) respondents who are unable to see an MS expert, and (4) respondents experiencing barriers related to affordability, MRIs, and other comprehensive care.

According to the survey’s results, the barriers to care that were reported the most often are as follows:

Affording medical care and MRIs (34%)
Finding MS care in one’s community (34%)
Finding doctors to coordinate one’s MS care with other needed care (31%)
No health insurance or high insurance-related costs, including deductibles and co-pays (21%)
Finding accessible transportation to medical appointments (18%)
Finding accessible medical facilities (8%)
Lack of culturally relevant care (4%)

In this first phase, “cultural humility” was highlighted. According to the study, “Cultural humility involves an ongoing process of self-exploration and self-critique combined with a willingness to learn from others. It means entering a relationship with another person with the intention of honoring their beliefs, customs, and values.”

With respect to the different cultures, people with different ethnic backgrounds reported higher percentages of those experiencing the barriers to care noted above. For example:

75% of American Indian or Alaska Native respondents and 54% of Hispanic, Latinx, or Spanish-origin respondents found affording medical care and MRIs to be a barrier to care (versus 34% of the entire group of survey respondents)
44% of Asian respondents had trouble finding doctors to coordinate their MS care with other needed care (versus 31%)
27% of Black or African American respondents experienced a lack of culturally relevant care as a barrier of care (versus 4%)

While the majority of these respondents did not feel that race or ethnicity played a role in their MS journey, the numbers of those who did think it played a role were still significant. More than 10% of Hispanic, Latinx, or Spanish-origin respondents; more than 20% of American Indians or Alaska Natives; more than 30% of Asians; and close to 40% of Black or African Americans, felt that race or ethnicity played a role in their MS journey.

Phase 2: Conduct Regional Roundtable Discussions

The second phase of MSAA’s MS Ecosystem Framework has been titled, “Living with Multiple Sclerosis.” This is defined as “A qualitative research project to understand the needs, challenges, and barriers of people living with multiple sclerosis in Inland Empire, California; Central Texas; Atlanta, Georgia; and Upstate New York.” These four locations were selected according to the most respondents with the greatest needs, along with representing different regions of the country.

Qualitative research took place from June to August 2024 through a series of remote, in-depth interviews and focus groups with people living with MS, patient advocates, and care team members. These were conducted in the four different locations (or “ecosystems”) noted earlier. The goal of this research was to examine the range of issues in each location more closely, and then to use these results to design potential interventions.

Other important topics emerged repeatedly throughout the interviews and focus groups, regardless of where people lived. These included issues involved with delayed diagnosis, misperceptions, quality of care, mental and physical health, support groups and counseling, family and parenting, trust, and employment.

Transcripts from the interviews and focus groups were analyzed and findings were outlined and plotted on “experience maps” for each location. Using this information, the researchers created a set of actionable insights about attitudes, challenges, and needs at different stages of MS. Examples of such insights include:

MS and its symptoms are frequently misunderstood or misinterpreted.
Race and culture can be factors in how long it takes to get diagnosed and start treatment.
Withdrawal, depression, and hopelessness are commonly experienced following a diagnosis

Phase 3: Personalized and Targeted Intervention

With the actionable insights in place, several possible interventions have been recommended. These include both digital/online tools as well as awareness and educational content initiatives.

Digital tools could encompass strategies for learning about: resources and support, specific symptoms prior to a diagnosis, and insurance coverage. Awareness and educational content may include public awareness campaigns, MS-specific education for medical professionals, and guides to address other specific needs identified in the first two phases of the study.

MSAA’s MS Ecosystem Framework initiative, which began with a national “Survey of Equity and Unmet Needs” in October 2023, followed by roundtable discussions through in-depth interviews and focus groups in 2024, has come full circle to identify the precise needs of a diverse community of people with MS and develop specific plans for personalized and targeted interventions. As we continue in 2025 with Phase 3 of this urgent research project, we will look for innovative ways to implement these strategies to best serve individuals with MS and help minimize the challenges they face in terms of care, treatment, and lifestyle.

MSAA’s MS Ecosystem Framework initiative was made possible through the generous support of the following sponsors: Platinum Sponsor, Genentech; Gold Sponsor, Amgen; Silver Sponsors, Novartis, and Sanofi; and Bronze Sponsor, Biogen.

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