Patient engagement may be coming to the fore in medicine and research but just who are the patients that clinicians and researchers are engaging with? Historically, minorities have been severely underrepresented in clinical trials and research activities.
A long-time patient advocate and activist, Greer-Smith is a one-woman powerhouse of patient engagement who is aiming to correct this. Her work involves bringing patients of all backgrounds on a journey of engagement and capacity building, as well as restoration of trust in healthcare systems and research activities.
A self-confessed baby boomer who came from a civil rights background, this later dovetailed with her education and experience in public health as a hospital administrator. She has diligently worked with underserved patients in minority and religious communities for over 20 years, with a view to building and maintaining collaborations between these communities and stakeholders that enable improved healthcare outcomes. Heavily involved in the Patients Centered Outcomes Research Institute (PCORI), she also runs her own company called Healthcare Research Associates.
More recently, in 2013, Greer-Smith established the S.T.A.R. Initiative (Strategically Targeting Appropriate Researchers) Initiative in 2013. She tells PFMD this aims “to provide education, engagement, and empowerment to patients who had suffered historical harm in research in health and who mistrusted the healthcare system”.
Greer-Smith is currently focused on building a unique app – she says this will continue her grassroots activism but transfer it to a digital platform; “we found that African-Americans and Latinos and many minorities are in fact the highest users of smartphones and they are most in need of this engagement and information,” she explains.
The E3 Mobile Application (Engage, Educate, Empower) is aiming to enable underserved, communities of color, underrepresented, racial and ethnic communities with resources, information, and social media engagement to learn about their health conditions. Greer-Smith explains that the app will be co-designed by patients, communities, and advocates to ensure its usability; a GoFundMe page is helping her gather additional funding for this initiative.
The goal is to help people from all backgrounds access reliable and up-to-date health information in the most convenient way. “What we are doing and what we have learned from our years of activism and community engagement, we were told by members that they didn’t know what they didn’t know – they were in dire need of reliable sources of resources and information,” she tells PFMD. Using credible and robust resources and information from the National Institutes of Health in the US, the resulting digital platform will ultimately empower patients to be “Research Ready” by becoming educated and empowered about health and clinical trials.
Greer-Smith is a strong believer in the role of data and technology in healthcare. “We are working with patients to collect their own data which can then be accessed on the app. Online engagement is also key and one of the key features of the app is that we are building chat features between patients and clinicians,” she says; this will enable what Greer-Smith calls “co-learning” for both parties.
“What I am looking to do is build this app but work with the pharmaceutical industry and wider healthcare sector to use this app as a valuable addition to healthcare delivery for patients. Not only do you want them to treat patients with their healthcare offerings but to help them with decision-making and an app can be a resource for them to offer patients without simply offering them a leaflet or pointing them towards a website. This will aid patients in making healthcare decisions,” she explains.
By identifying researchers most willing to engage with minority communities, the app will also hopefully help orientate users towards participation in clinical trials, something Greer-Smith sees as the “major gap” in healthcare today.
“Minorities and underserved communities have historically not been participants in clinical trial and research – it is hoped the app will allow these groups understand how they can become involved and the potential value of doing so.”
Greer-Smith’s career has been built on driving patient engagement among those that have historically felt ignored, and she isn’t done yet.
“There has to be a continued focus on those who have not been part of this conversation and this effort. Indigenous people, emigrants, refugees, and those who have been underserved, underrepresented, and really marginalised. This is an effort that can be translated to any country, any ethnic group, and any religious group. Find research and make it your own – that is my wish and my mission.”
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