Curated conversations with data science for social impact leaders on their career journeys
Pathways to Impact is a series of conversations with data for social impact leaders exploring their career journeys. Perry Hewitt, CMPO of data.org, spoke with Dr. Rachele Hendricks-Sturrup, Chief Data Governance Officer at the National Alliance Against Disparities in Patient Health (NADPH), and shares how her personal experience during the Great Recession led to her career path in data for social impact.
Please tell us about how your current work involves data for social impact.
Absolutely. Currently, my work touches on social impact and addressing health disparities through my affiliation with the National Alliance Against Disparities in Patient Health (NADPH). NADPH has partnered with collaborators like data.org to engage community-based participatory researchers as persons with lived experience. We’ve engaged them through in-depth one-to-one or group conversations to understand their personal journeys in their scope of practice or their field of investigation, and what their lived experiences have been with data. We seek to understand what role data has played along that journey, whether it’s demographic data, data gathered from digital behaviors, or more traditional forms collected through surveys.
We want to understand why data has been important to people and organizations in their professional and institutional level journeys. Oftentimes, as we think about data and how it has evolved over several decades, we can see that it’s become plentiful, yet the data itself is not always complete or accurate and can lack context. By talking to persons with lived experience, we can begin to learn that context and gain a deeper understanding of what stories data can and cannot tell us.
And how did you come to do this work? What drew you to it?
Honestly, I didn’t start off my career pursuing data. I finished my undergraduate degree in 2007, just before the Great Recession. At that time, I was a bench scientist working in x-ray crystallography and starting my pharmaceutical industry career journey. We were collecting data all the time, scientific data for our analysis, but collecting broader societal-level data was just not something that I learned to do. I wasn’t a social science major, nor did I study social sciences to an extent where I could apply a quantitative-level analysis to the human experience. I was trained to look squarely at natural science and the data that would interplay within that discipline and that’s it.
But one of the things that the Great Recession showed us all is that the practice and the dissemination of science cannot be relevant without understanding the social support needed to allow people like me to be scientists or scientific investigators within the natural sciences. What are the politics involved? How are they being informed? And really what’s the human impact? I hate to make it all about the human experience because science is of course focused on understanding the natural world through evidence. But really, in most instances, if you can’t tie the importance of science to the importance of the human experience, our role as part of the natural world, and the scientific world we’re investigating, then oftentimes you can’t communicate the need for science to policymakers, funders, or stakeholders.
Understanding and communicating that critical connection was an art form that I needed to learn. My own lived experience has allowed me to understand or at least have some level of perspective on the limitations of data that has been collected (or not collected) today, and to consider how we are making decisions based on data that’s probably incomplete or not telling the real or full story. I think we’re in a moment of generational renaissance, where we’re learning more about who we are and where we’ve come from, and what communities need based on the new ways of collecting data and analyzing data, as well as developing tools that we can leverage to collect specific data. That’s something that has been fairly novel, both generally within the scope or field of science, and also novel in my own professional journey. There are important questions that I couldn’t ask before that I can ask now.
Part of the Pathways to Impact series
Is there a specific problem within data for social impact that you are seeking to solve?
As a hard scientist, I’m looking to calculate how social drivers impact the outcomes that we see in ourselves and in our communities. Obviously, as we think about race and ethnicity as social constructs, now with the data that we’re able to collect and thanks to other scientific advances, we’re able to dig deeper into the human experience to understand what really predisposes us to disease, what really predisposes us to react in certain environments in a way that may or may not be in our best interests. I’m also exploring who has access to data, and who has access to novel ways of collecting data. Arguably, the most powerful stakeholders in the room have that access, but how can we transfer that power or share that power with communities who are perhaps less fortunate in terms of access so that they have a voice and so that they’re not just trampled over in the process of technological advancement?
We’re doing some work in gender now, where we discuss the need for women to be represented not only in the data but also as actors deciding what data is collected, analyzing the data, and making decisions based on the data. Does this resonate with you?
Exactly; that’s actually the crux of our work. How do we embed persons with lived experience more frequently and at deeper levels of the data life cycle? We’re looking at data collection, data analysis, and data dissemination: all those phases are critical because it’s important that people who are data subjects have opportunities to tell their story behind the data. Over the last several decades we’ve been doing a very poor job of that if we’ve been doing it at all. There have been people and organizations who have been able to make progress, meet people where they are, and meet their needs in whatever way they could without as much data. But now that we have all this data, how can we share it better and more effectively so that, again, persons with lived experience are involved in all aspects of the data life cycle moving forward?
While science and writing ability have been hugely beneficial, I didn't realize that the true superpower that I held within myself was being able to talk to people and engage with them no matter who they are, where they come from, or what type of person they are. Channeling that skill contributed to being successful in my career.Dr. Rachele Hendricks-Sturrup Chief Data Governance Officer National Alliance Against Disparities in Patient Health (NADPH)
Were there any unexpected blockers to your early career, or to your career progression as you advanced?
Honestly, there have been many. One struggle as a scientist is the inherent tension of the choice between pursuing science in the name of profit or in the name of passion. Especially today, as the income divide becomes more pronounced, scientists have to reckon with that question as they learn how to sustain their livelihoods and sustain their work. Working in a nonprofit or academia, the opportunities are rare. There’s always the question of, “Do I stay in the social impact sector and not earn the living that I want and run the risk of not having stable housing or affordable housing by living in a large metropolitan area where a university is based? Or do I go work for industry and earn the living that I want, but essentially abandon the side of myself that yearns for exploratory science for generalizable knowledge?”
I think that was something that I had to reconcile with very early in my career, particularly as I transitioned out of academia and government and into the private sector. I was able later to reconcile it, but it wasn’t something that came easily. I’ve had to challenge myself and make a lot of sacrifices along the way.
A second career challenge: I had to be patient with myself as I learned about the real world and take the time to work in jobs or industries that gave me a broader perspective outside of hard science. No scientist goes into science to do administrative work, but we end up having to do it anyway; we need to be open to learning how to do it well. I wouldn’t call it a roadblock, but it was another career choice I had to make and to which I needed to adapt.
Finally, there’s a moment when you might start a family and need to figure out where to live to be able to raise a family. For those who choose this path, it’s a moment where career decisions are no longer about just what you want but about what’s in the best interest of your family. As a woman, with a lot expected of us within and outside of the home, it’s easy to get burned out. I’d say this is the third challenge, realizing when and how to set boundaries to protect and preserve your own sense of self and your mental health.
What community of people or resources bolsters your work? What keeps you both professionally connected and personally supported?
Absolutely. I am an avid supporter and member of the Association for Women in Science; I’ve published in their magazine a few times, and I’m currently a virtual visiting scholar for one of their programs where I focus on the role of gender intersectionality in industry and academia collaborations and partnerships.
I also engage in local-level initiatives for women; I attend and support local women-sponsored events around the community. It’s a priority for me to support people of color, events that they host and promote, and groups that we put together to be a community. It’s easy in the 21st century to lose our sense of community because we have, again, a lot of digital means of connecting, but we don’t really connect. So, I try to make sure that I keep my boots on the ground to be a part of the community and show up for mothers and friends and family, and other folks in my community that I can support. I, myself, am from a village outside of Chicago; it’s literally incorporated as a village. There I watched my mother be a community leader as she demonstrated how you need to be the change you want to see in your community and the arbiter of your success. It’s not going to happen unless you get up and make it happen. You must also be able to inspire people around you to help you make that happen — to find your team. Community is where I draw my confidence to do the work that I do. Understanding the value of community, that we’re only as strong as we allow ourselves to rely and lean on each other. I bring a lot of that perspective and experience into the work that I do. I have a strong passion for what people and persons with lived experience have to say about that work. I believe that’s the ultimate foundation of our society: it’s in its people and their ability to be there for one another regardless of where they come from. If we can show up for each other, that trumps everything.
But one of the things that the Great Recession showed us all is that the practice and the dissemination of science cannot be relevant without understanding the social support needed to allow people like me to be scientists or scientific investigators within the natural sciences.Dr. Rachele Hendricks-Sturrup Chief Data Governance Officer National Alliance Against Disparities in Patient Health (NADPH)
So, we can’t do the data divorced from these other communal activities, is what I think I’m hearing. We can’t bifurcate into, “Okay, now I’m a hard scientist and I’m collecting data and now I’m a mother in a community.” Those two streams of work and life need to be closer together, which was part of the takeaways from RECoDE report we worked on together.
Absolutely. I think what data does, or at least what quantitative data helps us accomplish, is give us the LEGO pieces and the colors and shades and sizes of all the LEGO pieces that we need to build the LEGOLAND. And I think when you’re able to have conversations with people in the community and know how to talk to them, as a person with a strong sense of community, then you’re able to better tell that story using those LEGO pieces to build out that LEGOLAND in a way that people can get behind.
Because ultimately what was great about RECoDE is that someone in the group that we engaged in the community, said, “Wow, I really feel seen.” And so, if you’re able to accomplish that, that means that you’ve effectively taken whatever data you’ve collected to actually tell a story and to therefore drive home an actionable point.
That’s where you make the most impact. A lot of people don’t want to do that work because it takes time: you have to slow down. You can’t think that you’re about to show up to a community and save the day; you’re going to have to do away with that savior complex and slow down and appreciate the journey. A lot of people want to speed to the result or speed up to the outcome without fully appreciating the journey and the process and doing the work, doing the trust-building work.
How do you combine that important trust-building work and the data work? How do you get the balance right — whether you’re accountable to funders or to the government or to even your own time — to do both as effectively as possible?
As part of my journey as a professional, I’ve had to learn when to push back, when to say, “I know you’re the funder, I know you’re the person leading this project, but I need to push back to say you’re over-administering this project. You’re moving at a pace that the communities are not comfortable with. You’re moving at a pace that’s ultimately going to ruin our relationship with communities once we’re done with this project.” Ultimately, that approach will make us less effective with the data and otherwise.
I’ve had to learn how to have the strength to say that and how to have the tact to say it in a way that people can digest. If they’re good at taking feedback or constructive criticism, they’ll be able to hear it. But if not, knowing when to walk away is very important, too, because the last thing you want to do is sacrifice your relationship with communities for the sake of a single organization that might not be as connected to the community as you are.
Obviously, you have hard science skills, but when you think about the work you do with NAPDH or others, what other kinds of skills inform your contribution? Which skills in your career have offered the greatest return in your work?
One of the biggest skills I’ve been able to lean on — that I didn’t know I had, in fact, until later on — is my ability to engage people. This wasn’t something I learned in school; I learned that from my community. There’s great value in learning how to engage people, how to build consensus, and how to move at the pace of trust. That’s something that I exercised in school through activities, like in my role on the executive board of the Minority Association of Pre-Health Students as an undergraduate.
While science and writing abilities have been hugely beneficial, I didn’t realize that the true superpower that I held within myself was being able to talk to people and engage with them no matter who they are, where they come from, or what type of person they are. Channeling that skill contributed to being successful in my career.
What advice do you have for someone new to the field who is interested in doing this work? It could be a student you’re mentoring; it could be a mid-career professional who says, “I want to do more with my education and training.”
We all come to the table with our strengths and our weaknesses. I believe that if you’re able to leverage your strengths along or align them with your interests and make it a point to be a part of groups that have people that can fill in your weaknesses, that’s where you’ll do your best work.
I’d also offer: to be patient with learning, be patient with people. And I think it’s probably just human nature for us to indulge our biases and indulge our wishes and whims and impose our own will on people when we’re young. But I think the sooner you can realize that imposition of will is pointless, the more successful you can be.
What’s the next big thing in data for social impact that you see? What do you see coming that might help you in your work or help society get better through data?
I engage with a lot of people around that question! Given that we are currently faced with an oversupply of data in some cases and an undersupply of data in others, I think we can address that issue in the near term. And I think that undersupply is largely the social determinant of health data. We’re lacking the qualitative data that can help us tell the stories.
Social determinants of health data identify the level and quantity of barriers people need to overcome within a social context. For example, consider a child who has younger siblings and who also has a single parent for whatever reason: death, divorce, etc. That child would have caregiving duties for their siblings because the working parent is gone, the other parent is otherwise unable to co-parent, and that child probably must wake up early in the morning to make breakfast to take care of their parents or take care of whatever the other parent can’t take care of for whatever reason. They might live in an area that lacks transportation to school or reliable transportation to school. They may have little access to healthy food. Those are barriers that are just day-to-day barriers that that child has to overcome just to get to school. Compare that to a child who doesn’t have to overcome those obstacles: those two children might have the same academic or other types of performative potential, but one of those kids must overcome a whole mountain of obstacles just to actually demonstrate that potential.
Getting better social determinants of health data is attainable and would be hugely beneficial.
What’s your don’t miss daily or weekly read? What gets you through the day and keeps you informed and sane, if both things can be possible?
That’s a really good question. For one aspect of my job, I rely on particular sources like STAT News — that’s where I go to get all my health technology and innovation news. I’m also part of the Association of Healthcare Journalists where we get a daily newsletter and I can understand or track what journalists are looking at. These journalists are often gathering that anecdotal information and combining it with data, which is pretty cool. Finally, I get a lot of my information from LinkedIn where I am connected to my colleagues in the same or similar fields, so I get to stay up to date on whatever work they disseminate there about themselves. It’s a useful combination!
About the Author
Chief Marketing and Product Officer
Perry Hewitt is the Chief Marketing and Product Officer of data.org where she oversees the marketing and communications functions, as well as digital product development.Read more
Pathways to Impact
This data.org series interviews leaders in Data Science for Social Impact with a lens of how they got there, as well as the skills and experiences that have fueled their career progression.
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