There’s an emerging wealth of digital health data, but it’s far from living up to its potential to improve people’s lives.
We’re entering an era of new possibilities creating opportunities for disruptors and established leaders alike to develop innovative solutions which can lead to better health outcomes. But it will take intentional design to create experiences that are accessible to all, which connect patients and providers with actionable information that simplifies, rather than further complicates, how people manage their health, and empowers individuals to contribute to, and benefit from, a broader overview of health data. That can’t be accomplished without acknowledging and addressing inequities leading to disparate health outcomes.
Difficulties navigating a complex health infrastructure are preventing people from pursuing greater health.
Progress has been slow in terms of actually making digital health data useful for patients and practitioners, largely because it is fragmented and scattered, making it difficult to find, while often adding to practitioners’ administrative burden. Just 42% of respondents in R/GA’s recent health services research survey said their current digital health records were “easily accessible,” and less than a third (30%) said that about their historical records.
Accessible design that feels more human and intuitive will be a necessary component in using health data to connect patients with quality care within a health ecosystem that is notoriously hard to navigate.
When we asked survey participants about the biggest barriers preventing them from living their healthiest life, 39% of respondents selected reasons related to an information gap, – including not knowing what to do, who to go to for help – nearly as many respondents as the 40% who cited financial concerns.
That’s a lot of people who could live healthier lives with better-designed experiences that don’t lead to uncertainty, confusion and frustration. Too many people are finding they can’t connect with their own health data or the information they need to find the right resources and care providers. That’s a problem that could be solved with greater attention to and investment in designing valuable experiences. Aware that patients have low expectations of digital health experiences, too many treat this as an afterthought rather than an important investment.
Those experiences need to be designed to reach the greatest number of people, across sociocultural demographics and income levels, and to address individual needs and barriers to better health. This must include an emphasis on design that is user-friendly and accessible to all people, making the needs of disabled and neurodiverse people a priority throughout the design process, not an afterthought.
We need a wave of innovators to raise the bar and design with purpose.
Designing a better path forward
In the process of designing new health experiences, we can’t lose sight of the importance of centering equity and justice, of closing existing gaps and leveling existing imbalances. Beyond approachable and accessible design, these experiences provide a crucial opportunity to address existing injustices and gaps in information, health access and outcomes.
But the sharing of a broader range of data can only address these issues if it designed to do so. cAs we enter an era of new possibilities, data and technological advances could help close glaring gaps in care–or, by virtue of failing to account for systemic inequities, it could continue to perpetuate them.
A prevalence of new data will be of limited use if it doesn’t address the sex differences that have led to a data gap when it comes to understanding women’s health, which contribes to underdiagnosis of conditions presenting differently in women, disparate health outcomes, and women’s health concerns being taken less seriously than men – particularly as it relates to reported pain. Women are more likely to have a number of chronic pain and autoimmune conditions, and, according to Doing Harm author Maya Dusenbery, account for 70% of patients with “medically unexplained symptoms.”
These issues are further amplified for women of color, who face barriers to quality care due to both sex and race.
While women as a whole are less likely to have their pain taken seriously by medical practitioners, this is especially true for Black women. A 2011 review of scientific literature, found that physicians significantly underestimated pain scores for African Americans, compared to other patients.
Practitioners are less likely to take the concerns of women of color seriously, leading to underdiagnosis and gaps in quality care which contribute to disparate health outcomes. Perhaps the most well known of these is a grave disparity in maternal mortality for women of color, with Black, American Indian and Alaska Native women two-to-three times as likely to die from pregnancy-related causes compared to white women, a figure which rises to four-to-five times for women over 30, according to a CDC report.
If existing health platforms won’t address these issues, it will be up to disruptors to fill the void.
“If we are going to design more equitable solutions, we need to see where the disparities and the inequities exist,” Ashlee Wisdom, MPH, told R/GA. As the co-founder and CEO of Health In Her HUE, (disclosure: an R/GA Ventures Coalition member), she is developing one such platform centered around helping Black women and women of color with “navigating the healthcare system that, quite frankly, isn’t designed for us.”
Launched out of “a sense of frustration” with the current system, Health In Her HUE is a platform connecting women of color with culturally sensitive practitioners, as well as information and content centering their experiences, creating a networked community, and collecting data designed to close existing data gaps from its inception.
“We felt like it was important for us to build a platform that stood in the gap for Black women as they’re navigating a system that can be intimidating and, quite frankly, harmful to them,” Wisdom said. “We don’t want them to be avoiding care because of the distrust, because of the fear or the trauma of having had a negative experience in the past with a provider.”
A cross-sectional study of 39,171 California adults, published in 2018 found that those who had experiences of perceived racial or ethnic discrimination were 84% more likely to delay or forgo medical care.
The pandemic has shown us how inseparable individual and collective health is, underscoring the vital need for health initiatives and brands to be tied to purpose – because that lesson is far too important to ignore.
“You must have a values-based framework for why you’re choosing to innovate,” Anton Gunn, 937 Strategy Group CEO and former head of the Office of External Affairs at the U.S. Department of Health and Human Services told R/GA. “Entrepreneurs need to have a justice framework of saying ‘Who is most disadvantaged by the broken health care system and what can I do to make it right?’”
From large corporations with a long history in healthcare to emerging innovators, to design and marketing partners, we need to ask ourselves if the platforms and experiences we’re creating are contributing to greater equity in health, or perpetuating existing inequities and injustices.