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COVID Advocacy Exchange Platform Unites Patients, Industry And Experts

COVID Advocacy Exchange Platform Unites Patients, Industry And Experts

Source : IN VIVO

The spread of COVID-19 across the globe in early spring – and the resulting cancellation of in-person meetings and conferences – stifled the connection between bioharma companies and the global advocacy community. While some meetings pivoted to virtual gatherings, others were cancelled. This disconnected patients and advocacy organizations from information and resources they needed to cope with pandemic-related challenges.

Disparities in COVID-19 infections, testing and treatment corresponding with ethnic, racial and sexual orientation or gender identity, combined with a spike in mental health issues and narrowed access to health care products and services, has raised alarms in the global advocacy community. Basic needs such as housing and food security were exacerbated by the pandemic, too, which can have wide-ranging health consequences. “When COVID started to really spread across the globe, we were asked by our leadership team, ‘How can we be helpful to the advocates in an innovative way during this unprecedented time?’” said Cathy Trzaskawka, executive director and head of global advocacy at Bristol Myers Squibb Company, in an interview with In Vivo. 

GRYT Health, a digital health company that uses mobile applications, online communities and social media to connect patients, survivors and caregivers with disease experts, information and resources – including biopharmaceutical company partners and active clinical trials – was founded and is run by individuals “personally effected by a cancer diagnosis,” said GRYT Health CEO Dave Fuehrer, on the company’s website. In October of 2019, GRYT Health hosted its inaugural Global Virtual Cancer Conference, an open public event aimed at bringing cancer stakeholders together to collaborate on a patient-centric framework, using GRYT Health’s digital platform.

BMS participated in the 2019 virtual conference, and through that partnership, Trzaskawka said BMS “knew that [GRYT] had the platform and capability” to create a space for people to come together and talk about needs and experiences related to COVID-19. Trzaskawka called Fuehrer and asked if GRYT would be willing to partner with BMS on a platform intended to support all people across all disease areas during the pandemic. “When I called Dave to ask him, he immediately said yes, and we went back and talked to our senior leadership at BMS, and they agreed to support it,” said Trzaskawaka. The resulting COVID Advocacy Exchange platform, launched in May 2020, is intended to “unite advocacy organizations, patients and industry leaders, and have a forum where we can exchange information during and beyond the pandemic,” Trzaskawaka said.

The COVID Advocacy Exchange platform is designed to look like an in-person meeting space, with a lobby, exhibit hall (where participating organizations have virtual information booths), auditorium, information desk and even a lounge, were visitors can enter chat rooms organized by participating advocacy groups and other organizations. Starting in May, the Exchange began hosting live weekly sessions, open to the public, where advocates discussed issues or problems they were experiencing during the pandemic, and to locate solutions and resources to address them. In September, the live sessions were spaced to once a month, but continued to focus on understanding patient needs, and providing a network for convening and sharing information.

Formal topics and speakers are provided for each session, but everyone joining the live events are encouraged to share their own experiences, which has created authentic and unscripted conversations between a wide array of individuals. That is the goal – to facilitate a “co-created” information exchange, based on what is most important to participants. Speakers have included physicians, academics, executives across BMS, patient advocacy organization leaders, students, professors, and others such as Adam Grant, an organizational psychologist and author, and Shanelle Gabriel, a singer, poet, and currently the interim executive director at Urban Word NYC, a youth literacy and arts organization. More than 15,000 people have visited the site from over 80 countries, according to Trzaskawaka.

Anthonise Louis Fields, director, US strategic collaboration lead and head of the COVID task force at BMS, participated in the COVID Advocacy Exchange’s 12 November session, titled Taking Action to Correct Health Inequities. During the session, Louis Fields emphasized the importance of advancing interventions that collaboratively bring multi-sector, multi-disciplinary perspectives, insights and resources to bear on the social determinants of health. “COVID is not just a health care issue, it’s also a financial issue,” Louis Fields told In Vivo. “We’ve noticed that in Black and Latinx populations, data shows that 40% of black-owned businesses will in fact not be open after the pandemic, and that is a real challenge.” BMS is partnering with community organizations to fund restaurants in minority communities, and to provide food and other resources to front line workers, as well as seniors and children experiencing food insecurities.

BMS teamed up with World Central Kitchen, a non-profit disaster relief organization founded by celebrity chef José Andrés, to support small businesses and combat food insecurity in four cities: El Paso, TX, Chicago, IL, Los Angeles, CA and New York, NY, said Louis Fields. BMS also partnered with, a health and wellness online resource for people of color, to create a social media “counter-campaign” designed to combat the “pervasive misinformation around COVID,” said Louis Fields. That effort includes sponsorships of “Medical Moments” videos featuring doctors of color talking about COVID-19 risks and ways to mitigate them, and Facebook Live events providing accurate information about the SARS-CoV-2 virus and addressing barriers to vaccination in high-risk communities.

BMS is enrolling patients in a proof-of-concept trial testing the safety and efficacy of Orencia (abatacept), an arthritis drug, in hospitalized patients with COVID-19, and has also donated doses of Eliquis (apixaban), an anticoagulant, and Orencia to a Project Warp Speed-funded NIH Phase III study of potential COVID-19 treatments. However, Trzaskawaka said the COVID Advocacy Exchange was not created as a clinical trial recruitment tool but to demonstrate BMS’s commitment to supporting patients and advocates. “We have a [separate] internal process that launched this year – the Patient Expert Engagement Resource (PEER) – that brings the patient voice into our discovery, development and commercialization efforts at BMS,” said Trzaskawaka. “We contract with patient advocacy organizations, and when there are questions about trials or protocol design or other company activities, we work with our partners to get feedback directly from them,” she said.

Clinical trial diversity is another issue BMS is working to improve. The company is working to “educate different communities about clinical trials, and to identify diverse physicians who would act as trusted voices, who can translate [information] to patients and also lead clinical trials.” Ancillary costs associated with clinical trial participation is a key hurdle, said Louis Fields, and BMS is “leveraging the COVID Advocacy Exchange to gain insight and best practices into the design of the clinical trials, to ensure that trials are not being designed in a way that acts as a barrier to participation.”

During a COVID Advocacy Exchange live session on 17 December, Fuehrer announced plans to create working groups pulled from Exchange participants in five key areas: health equity, patient voice, telemedicine, COVID-19 impact reduction, and practical activities to support communities. Sandra Leung, EVP and general counsel at BMS, added that virtual live sessions would continue in 2021, in addition to “added resources to support the global advocacy community.”

By Ben Comer