Each year, the South by Southwest (SXSW) conference puts Austin, Texas center stage as it gathers great creative thinkers and doers from around the world – and each year, Intouch is there (this year, of course, virtually). This post is part of our series on the major themes our team saw arising from the thousands of sessions and speakers talking about health, tech, creativity, and innovation at SXSW 2021.
The theme of addressing systemic inequality ran through many SXSW sessions, and Intouchers in attendance were paying special attention to how the facets of inequality (including, but not limited to, race, age, and gender) manifest in our healthcare industry. In our after-hours discussions, it became clear to us that, through our influence as healthcare marketers working on over 150 therapeutic products, we have both power and responsibility to create changes in the system.
One resonant statistic provides simple proof of health disparities: white Americans have a life expectancy several years longer than Black Americans. This is neither arguable nor coincidental. In a session titled Anti-Racism in Cancer Care, Dr. Cardinale Smith of Mount Sinai pointed out the many ways in which racial inequity exists “throughout the cancer-care continuum”: prevention efforts, screening, diagnosis, treatment, outcomes, palliative care, and end-of-life care. She pointed out that the disparities were mediated by patient, system, structural, and clinician-level factors. Patient distrust can be fueled by many examples of racism – as Dr. Smith offered the Tuskegee experiment, the use of the cells of Henrietta Lacks without her consent, and the gynecologic surgical experimentation of Dr. Marion Sims as three.
Here, however, we’ll identify and focus on two other categories of issues: logistical unfairness and systemic bias. Much can be done in these areas to improve care, improve trust, improve use, and thereby level outcomes.
Logistical Imbalance
In his keynote session, U.S. Secretary of Transportation Pete Buttigieg pointed out, “It’s our responsibility to get back to local logistics. How do I make sure everyone has equal access to getting to a hospital, when they don’t have a bus line to their neighborhood or access to a car?”
Problems with logistics and inequity are myriad, but access to care is among the most challenging to overcome. Insurance, location, travel: all of these barriers can prevent people from getting the care they need. Information and technology access can also create intangible – but no less intractable – barriers to care. Language barriers; lack of wifi; lack of experience using digital technology: all of these can get in the way. Many examples were offered at SXSW, including a patient whose lack of experience using a FitBit made it impossible to use as adjunct therapy; a family who drove to the hospital to use wifi for a virtual appointment (which was only addressed when the doctor happened to recognize the wall behind them, and pulled them in for a live appointment); or a disabled parent with a child who needed a medical visit (which was able to be addressed through a visit with both the school nurse and a translator).
Solutions to logistical problems are out there. But all too often, today, if they’re addressed, they’re ad-hoc, as with the examples above. Systemic solutions need to be instituted, and they can include:
- Telehealth. It has broken down barriers to healthcare, opening access to Black and brown communities. But, telehealth remains disproportionally tilted toward wealthier, insured people with access to computers and wifi. We must take extra care to balance the system for these underrepresented groups: offering translators and culturally aligned nursing support; loaning or gifting wifi-enabled technology for after-care assessments (along with the training); ensuring telehealth platforms are easy to access from smartphones and that appointments don’t require registration through a portal for access.
- Considering digital literacy when developing patient materials. Pharmaceutical brands attempt to differentiate by creating unique experiences, slicker and more impressive UX for their digital tools, etc. But this excludes groups who may own smartphones without the ability to use or understand complex content. We must more purposefully consider digital literacy, age, and language use in use cases, and create versions of tools to accommodate varying needs.
- Hands-on assistance for underrepresented groups would help their experience. Consider preparing office staff to call patients before appointments to offer video support and practice using their Zoom link, and/or changing patient support messaging to ask questions about barriers, and then offering support with language and/or technology.
- Leverage community as channel. Few brands can afford mass awareness; most have moved spends to digital channels, battling category competitors for those precious keywords and endemic content. But underrepresented communities are also underrepresented in these channels. They get their information from their communities, from their churches, from their local clinics. How can we leverage those to spread awareness?
Health is a local issue, not just a global or national one, and needs to be addressed as such, with public health solutions at all levels. To understand what challenges patients – and HCPs – are faced with requires understanding who they are, where they live, where they work, and what their everyday includes. As we heard at SXSW, health is an issue that requires community efforts to make change. When we think about it too broadly, we risk creating solutions that only work for the richest and most privileged and leave behind the people who need them most.
Systemic Bias
Systemic bias is no less insidious than logistical bias. It can be less obvious because, to fix bias in a system, you have to know the system well.
For example, clinical trials are not regulated against racial balance, and recruitment takes place with inherent bias. Trials are often recruited through leading hospitals, physician relationships, and online, which selects for those with access to those worlds. As a result, the medicines being created are often, statistically, only proven to work on white people, or at best are less effective in non-white patients. This can support the narrative among patients of color that these advanced novel treatments are not for them. For instance, COVID trials, done at speed, did not include significant numbers of non-white enrollees – which is being cited as a reason for distrust in the vaccines by people in these populations, in addition to the aforementioned extensive, horrific history of medical racism.
Also, HCPs retain racial biases that can lead to unequal care. Just five years ago, a study found that half of medical students and residents held false beliefs about biological differences, i.e., pain tolerance, between Black and white people. The burden lies with the medical community to correctly train new – and existing – HCPs to begin to remove bias from their care. As the Anti-Racism in Cancer Care session noted, HCPs have to be better trained in how to effectively communicate with people who have had different life experiences from their own.
And, of course, pharma marketing can be, and is, rife with systemic bias. It’s in the development of targeting and testing approaches. It’s in AI, our “digital exhaust,” or, at least, the exhaust of someone who is well-off enough to have smartphones, smart TVs, and therefore is likely to be insured – and white. It’s in the development of marketing briefs that list one primary target and one campaign … one approach for all, despite varying audiences who need to know about the medicine. A Geena Davis Institute talk explicitly called out the act of mentioning diversity in a creative brief as a way to begin to effect change.
When moments of racism arise – and we’ve had far too many, particularly recently – we want to rise up and denounce them. Everyone puts out emotional advertising about equality and peace. But it’s on us to bring that energy into our daily work – not just in moments of crisis.
This isn’t about stock photography or diverse focus groups – it has to penetrate every step of the process and every level. We must develop more diverse clinical trial designs, and recruit for them with more inherently inclusive approaches. We must push our market research design to ensure we have diverse representation to inform our marketing. We must make sure diverse populations are represented when we choose what to communicate in marketing. And once we do all that, then we can be better equipped to tell personal stories that truly connect.