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Addressing data challenges to improve health equity

Emily Donaldson   |     September 17, 2021   |   SHARE THIS

The COVID-19 pandemic has shed light on the ways that systemic racism pervades nearly every facet of life – especially within our health care system. The biopharmaceutical industry is dedicated to tackling these issues head-on and addressing health disparities that disproportionately affect communities of color and other underserved communities. Driven by this commitment, PhRMA is releasing a series of papers that identify some of the challenges to improving health equity, potential solutions to those challenges and barriers to implementation and actionable steps to knock down those barriers.

At the root of the challenges we're seeing sits data – or, better put, stark gaps in health data. The failure to properly collect race and ethnicity data has been an unaddressed problem for decades – and correcting this failure is a crucial step towards true health equity. Without actionable data, researchers, policymakers and health care providers cannot effectively work together to confront the reality of what's happening within our communities: higher rates of negative health outcomes for people of color due to systemic racism and an ongoing failure to address such health disparities.

PhRMA's latest paper, released earlier this week, identifies several proposed solutions to address data collection challenges and explores barriers to implementation. Some of these challenges include a lack of actionable data collection practices and genuine apprehension from providers and patients, who have expressed a variety of concerns with collecting that data.

Previous policies have tried to address this data gap, but as the COVID-19 crisis exacerbates disparities in health data collection, we see more initiatives tasked with facing this challenge – and, now more than ever, we recognize the need to find patient-focused, meaningful ways that are ethical and consistent with relevant legal requirements to address data gaps across the health care system.

Like so many of today's most pressing issues, these barriers are interconnected and require clear action from all stakeholders – from federal government agencies to local providers and everyone in between. The current lack of actionable data – data that adheres to common, granular standards and is accessible across data collection systems – and the absence of clear incentives and requirements to collect that information are key challenges we must overcome. A combination of inaction from leadership across stakeholders and a lack of funding have created barriers to collecting and using data to develop lasting solutions.

In addition to the logistical challenges of data collection, we also observe emotional reluctance – by patients as well as providers – when it comes to sharing race and ethnicity data for reporting purposes. Health care providers have cited concerns about the usefulness and legality of collecting such data. And patients have valid distrust of the medical system and concerns about possible repercussions – especially when data collection fails to engage patients from beginning to end. So as we begin to repair the cycle of broken data streams that plagues the health care system, we need to simultaneously – and meaningfully – mend the fences that let this distrust thrive.

Recognizing the real barriers to collecting actionable health data – and the ways in which stakeholders can come together to eliminate them – is one of the many urgently needed steps in our collective goal of improving health outcomes for communities of color. Read more about the importance of tackling gaps in health data collection in our latest paper

Emily Donaldson

Emily Donaldson is a deputy vice president of policy and research at PhRMA, working with PhRMA’s state and federal policy teams to improve patient access to medicines and encourage alignment between state and federal policies. Prior to joining PhRMA, she worked for the Blue Cross and Blue Shield Association focusing on state health policy. Having recently moved to Tokyo, Japan, Emily enjoys exploring and learning about her new home with her husband and two sons.

Topics: Research and Development, Equity

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