Cultivating a Teachable Spirit: A First Step Toward Co-Creation 

Co-Authored by: Karen Frazier, Ph.D., Senior Researcher, AIR; Libby Hoy, Founder & CEO, PFCCpartners, and Natrina Kennedy, MPH, Program Associate, DASH 


On April 22, 2021, All In: Data for Community Health kicked off the Developing Meaningful Measures by Centering Community Voices Affinity Group with subject matter experts from the American Institutes for Research (AIR) and Patient Family Centered Care (PFCC) Partners. The launch of this Affinity Group was filled with so much enthusiasm, as approximately 100 participants from across the nation gathered virtually. This kickoff was one of six sessions created for people to share best practices on how to build and sustain trusting relationships with people who have diverse lived experiences and to co-create measurement that is driven by and focused on what communities know matters most to their health and well-being. The ultimate goal is to elevate community power in data sharing efforts and advance health equity.  

The design of this Affinity Group is rooted in AIR work funded by the Robert Wood Johnson Foundation focused on how to use measurement to drive transformative, meaningful, and sustainable change. For more than five years, AIR and PFCCpartners have collaborated together on a project focused on patient-centered measurement, that is, health care measurement is driven by patients’ and caregivers’ expressed preferences, needs, and values. This project showed that the key to making measurement patient-centered is for measurement teams, patients, and their caregivers to do measurement work together as equal partners. Equal partnership is when patients, families, and community members co-create or decide together what metrics to measure, how to measure them, who should get the results, and how to use those results. 

Members of the DASH National Program Office team sat down with the lead facilitators, Karen Frazier of AIR and Libby Hoy of PFCCpartners, to learn more about how their partnership mirrors what they are teaching in the Developing Meaningful Measures Affinity Group. At AIR, Karen’s work focuses on how centering people and communities in measurement can lead to systems change. Libby got started in this line of work as a mother of three sons with mitochondrial disease, who each had a total of six specialists. After many long nights in the hospital, Libby realized that in the culturally diverse city of Long Beach, California, not everyone who entered the hospital had the same opportunity to partner and set a team approach to care. It was extremely helpful for Libby and her family to have a pathway to care that was in direct alignment with their values. As a result, partnership has been at the core of PFCCpartners’ work. Libby noted, “This is really interesting too is that [w]e came from two different perspectives, obviously lived experience and professional but also, you [Karen] looked at systems first, and I was in the middle of a system and never saw the system,” said Libby of PFCCpartners. 

AIR’s work in patient-centered measurement alongside PFCCpartners ’ lived experience is a dynamic duo. Together, PFCC and AIR co-create the Affinity Group meetings. This requires them to trust, listen to one another, and be both flexible and ready to change plans. When asked, what trust looks like in their partnership, they stated that it is essential to have an open space for people to talk where others are ready to listen, hear, and understand other perspectives, and then take action on what is heard. Karen added, “all partners should be treated and valued as equal members of the team. They should have access to all the same information as other team members, they should be included in the team’s activities, and their ideas should be acted upon.” It is important for organizations entering into partnerships with community members to be authentic, humble, and ready to learn, recognizing what they do not know. According to Libby, “when building authentic relationships; we must be prepared to be incompetent.”  

This Affinity Group is focused on partnering with community members around measurement because measurement is directly connected to power! Karen points out that traditionally, “measurement is used by those in power to set goals, define success, and determine resource allocation.” An important part of changing systems and making them more equitable is changing how those systems use measurement. Re-centering measurement around people and communities—especially those who have been excluded and marginalized—helps recenter systems around people and communities. Karen describes that by co-creating measurement with patients, families, and communities, we can “focus on what they care about, center their voices in the decisions that impact them, realign power structures, and build equity into systems as opposed to reinforcing inequities.” Measurement also provides an outlet for patients, families, and communities to act on the sense of urgency that they feel in the face of an inequitable system. Libby mentions that “measurement activities are complicated, but they give us, community members, an informed path forward. We cannot fix a problem that we cannot see because it hasn’t been measured.” 

When asked what they have in store for this Affinity Group, Libby informed us that they are sticking to co-creation – to decide together with the participants what topics to cover. Karen and Libby’s greatest hope for participants is that when they walk away from the sessions, they have cultivated what Libby refers to as a “teachable spirit.” This means that when partners approach measurement work together, they are prepared to build and sustain trusting relationships by recognizing that there is a lot that they do not know. It means decentering themselves and listening, hearing, and valuing their partners as equals when identifying shared goals and co-creating measurement. It means having humility! Humility is at the heart of every meaningful partnership centered around measurement, as it has the potential to contribute to more equitable systems that reflect the needs and priorities of communities. This Affinity Group will continue to engage organizations and individuals from across the country interested in leaning into meaningful partnerships to do measurement work.  

This Affinity Group has not only been well received but has given DASH awardees an opportunity to learn, connect with peers, and gain insights on how to advance the field through measurement and community partnership. It is not too late to join this Affinity Group, which meets virtually, every 4th Thursday at 11:00 a.m. central standard time. Click here to learn more about the Developing Meaningful Measures by Centering Community Voice Affinity Group and a listing of other Affinity groups on our web page.  


For the downloadable version of this publication, click here.

Webinar Recap: Creating Shared Power Through Community Collaboration

By: Ruchi Patel, Northwestern’s Applied Practice Experience Intern for Data Across Sectors for Health (DASH)


All In Data for Community Health hosted a showcase webinar, Building Community Capacity by Sharing Power, Storytelling, & Systems Change, on April 21st, 2021. The recorded session, resource guide, and PowerPoint presentation slides accompanying the webinar can be found on the All In website

This summary provides 4 takeaways on racial health equity, focusing on the barriers Black mothers face regarding maternal and infant health outcomes and how two organizations have created spaces for Black women’s voices to be heard and drive changes within institutions. This discussion was initiated by Dr. Meredith Shockley-Smith, the Director of Equity and Community Strategies at Cradle Cincinnati, Queens Village, and Brittney Mosley, the Community Health Director at the Mississippi State Department of Health. This webinar was moderated by Ninma Fearson, senior associate for the Health Impact Project at The Pew Charitable Trusts, an All In partner.

The topic of this webinar was how increasing community capacity could catalyze health equity. Dr. Shockley-Smith and Brittney Mosley shared their insights into how their work leads to the engagement of Black women and holding institutions and systems accountable to reduce racial disparities in maternal and infant health outcomes. Some of the primary goals among each organization included reducing racism and racial disparities associated with infant and maternal mortality rates; and creating sustainable system changes within multi-sector groups. 

  1. Establishing collaborations among multi-sector groups enabled Shockley-Smith and Mosley to work with allies to break institutional and systemic barriers creating equitable opportunities for Black women. Black women are not being heard by their physicians and society when it comes to their own health. Birth outcomes for Black women are drastically different compared to White women, as they are not receiving emotional support before and after pregnancy. As a result, they needed external partners such as the department of transportation, the department of education, the Mississippi Division of Medicaid, and the Mississippi Public Health Institute to be involved in change.

The Mississippi State Department of Health also involved the following organizations as part of their home team for partnerships:

  • the Meridian Freedom Project as a community liaison, 
  • United Way
  • Mississippi State University
  • EC Health Net
  • food pantries
  • faith-based organizations
  • WIC centers      

    “Because of that … strong Black women’s mentality, ‘oh it can’t be that bad”, complaining or ‘you’re stronger than you think’ that kind of concept really impacts outcomes of birth. We get at having to make the value of women, the voices of Black women, be important to everyone including medical professionals, but also to society at large. I want to walk around in a Black body and be valued.” –Dr. Meredith Shockley-Smith 

      2. Both speakers discussed the importance of capacity building as racism, and explicit bias commonly occurs in the health workforce. By sitting together and discussing, women can openly share their issues and create a vision for this movement with the Queens Village Board. This is what centering Black women looks like, as they express their needs for their own health. Bringing together community members with other stakeholders to share concerns, skills, and knowledge can empower communities to create sustainable goals in different ecological levels of health.

      3. By increasing shared power towards communities, more funding or infrastructure can be provided directly to these causes, reducing maternal and infant mortality rates. Funders came to the Queens Village board and asked how they would like to see the money being spent. By opening up possibilities to the community, they can achieve increased levels of health initiatives as they are the individuals who know the health status of the community members and can prioritize funds as they see fit. 

“At this table there are queens, so there are community members who are on boards. There are queens who are not board members and there are staff members on the Queen’s Village board who are taking notes about conversations about what the movement should look like. That’s what we mean when we say ‘centering Black women’.”- Dr. Meredith Shockley-Smith

4. Another key takeaway is the value of advisory boards, which provide support and guidance to community stakeholders. The community advisory board outreached to Black women to better understand their needs and barriers to identify the root causes of infant and maternal disparities. Dr. Meredith Shockley-Smith mentions how Queens Village used a community advisory board and community-based participatory research (CBPR) to continually center Black women to know what resources they need to reach a level of health equity.


Additional Resources

You can find additional resources and approaches to building community power and improving maternal health outcomes within the All In Network. A Trailblazer talk was given during the All In National Meeting 2020 titled “Disrupting Business: Building a Community-led Movement to Address Racial Disparities in Infant Mortality” highlights the importance of qualitative data and community engagement methods to improve maternal health and eliminate infant mortality. This talk was presented by Lora Gulley and Alecia Deal of FLOURISH, an initiative powered by Generate Health, with the goal to reduce infant mortality in St. Louis. One FLOURISH community change project focused on providing resources to Black pregnant and families during the COVID-19 pandemic. They worked with the St. Louis Metro Market to supply fresh produce to women during their pregnancy and distributed essential care packages to families who may not have had access to resources for their newborns. Lora Gulley described their community leaders cabinet (CLC), which comprises community residents who either live in high-impact zip codes or have lived through adverse birth outcomes. These individuals can decide on the key priorities that Generate Health should focus on and invest their time and funding on. Using the CLC allows community members to advocate for their needs and make sure that resources are being distributed equitably.


All In Podcast Season 3 Is Here!

The wait is over – Season 3 of the All In Podcast has begun! Our new host, DASH Program Manager Miriam Castro was joined by Detroit’s very own Tawana Petty for the first episode. As an author, organizer and advocate, Tawana has made huge impacts in issues ranging from data equity to racial justice and more. In this episode, she discusses: how business drives facial recognition technology, who benefits from surveillance technology, Project Greenlight and more. Listen to the podcast here and join the conversation on social media and our online community!

Episodes from seasons 1-3 are available on SoundCloud, iTunes, Stitcher, and TuneIn.

Season 3 Episode 1 

Mass Surveillance of Black Bodies & Anti-Racist Data-Sharing: An Interview with Tawana Petty

Tawana Petty is a mother, social justice organizer, youth advocate, poet, and author. She is intricately involved in water rights advocacy, data, digital privacy rights education, racial justice, and equity work. She is the National Organizing Director at Data 4 Black Lives (D4BL), and director of Petty Propolis, a Black woman-led artist incubator primarily focused on cultivating visionary resistance through poetry, literacy and literary workshops, anti-racism facilitation, and social justice initiatives. Podcast Host Miriam Castro and Ms. Petty discuss how the push for biometric mass surveillance in Tawana’s home city of Detroit has contributed to the dehumanization of Black bodies during COVID-19. Tawana shares with Miriam the process all allies must take from allyship to co-liberation to foster real social justice and what steps organizations can make to create anti-racist data-sharing efforts.

Resources for this podcast episode are available at:

All In’s Shared Vision for Racial Equity Includes Understanding, Acknowledging & Creating Inclusive Spaces

By: Miriam Castro, Program Manager, Data Across Sectors for Health and Susan Martinez, MUP, Program Associate, Data Across Sectors for Health

On October 22, 2020, All In: Data for Community Health hosted a webinar training, All In for a Shared Racial Equity Vision, led by Shavon Arline-Bradley, Founding Principal of R.E.A.C.H Beyond Solutions, LLC. Her training helped participants define what the All In community means when it talks about racial equity. Through this training, participants learned how racial equity and inclusion show up in multi-sector community collaboration and data sharing work; understood what racial equity is; and felt more confident to take the next step and act in their professional capacities to address racial equity

Watch the webinar recording of All In for a Shared Racial Equity Vision and download the handout here.

A shared vision starts with understanding our shared language and what we mean. As such, the training started with a level setting activity. Shavon opened with a set of images: the COVID-19 virus, the Zoom logo, the photo of George Floyd’s final moments on earth, an image of protests, and finally an image of the 2020 election. Her prompts brought a mix of reactions from the 154 participants who attended. Reactions ranged from outrage to pain to hope. 

“Our personal reactions stem from our understanding that the influence of society is reflective in our work and in the capacities in which we serve,” Arline-Bradley said. “Individuals bring their biases, perspectives, and worldviews to the table and it affects the way that we implement and engage in public health.” 

This simple but powerful concept and the following definitions guided the training:

Determinant A label/element has been placed on individuals by society and aligns with how someone is going to thrive. For instance, race has been a core determinant of an individual’s value in our country, as has class, a person’s access to finance, and their gender, be it identity or orientation. In America, this has shaped the policies and practices around how an individual is determined. If a person is not valued within their society, it will directly impact a person’s ability to thrive.
Race A social construct that artificially divides people into distinct groups based on characteristics. Used to define dominance and access.
Racism Institutional and individual practices creating and reinforcing oppressive systems of race relations. Whereby people and institutions engage in discrimination adversely restrict, by judgment and action, the lives of those against whom they discriminate. Racism is a harmful determinant of health by the system that has instituted racism has a major impact on the lived experience.
Lived experience How a person is treated, set against standards (imposed by someone else) and affects the jobs that are available to a person and environmental exposures, etc; based on a determinant (such as race)
Anti-Racism The process of identifying, challenging, and eliminating the values, policies, and behaviors within the interlocking systems of social oppression (sexism, classism, heterosexualism, ableism) to redistribute power and transform racial disparity outcomes. That is so the factors are no longer a predictor of success or failure for People of Color at the structural level. 
Anti-Racism in practice An operationalization of pushing policies and practices to redistribute power and to transform disparate outcomes. Race is no longer a factor.
Equality Equal distribution of resources
Equity Providing all people with fair opportunities to attain their full potential to the extent possible, including the presence of policies and practices to provide everyone with the support they need to improve the quality of their lives. Who defines full potential? Who defines this optimal experience? The intent for equity is around fairness, free from injustice, or free from systemic barriers. 
Racial Equity Race no longer determines your outcome. Race isn’t a factor in one’s ability to thrive.
Racial Equity Framework Whereas a lens can shift a framework is solid. A racial equity framework takes into account race and ethnicity and considers the disparities and structural root causes of critical issues.

A shared vision involves a careful decision around what lenses and frameworks are useful for shared work. Arline-Bradley walked through the differences between racial equity and racial justice as lenses. The latter involves acknowledging racial history and understanding how it shows up in our work and in our lives. Recognizing that individuals have not been in positions of power to create change, to be meaningfully involved and who haven’t had a seat at the table to help create structures that can help change their current circumstances. 

A racial equity lens separates symptoms from causes, while a racial justice lens brings into view the confrontation of power, the redistribution of resources, and the systemic transformation necessary for real change.

“I really appreciated how Shavon dove in the details about diction and what specific words truly mean, especially when they have a vast impact on different issues like health equity, representation in decision-making/programming, etc when acted upon. There are differences between equality vs. equity, outreach vs. engagement, acceptance vs. inclusion – and Shavon picks up on these nuances and can talk about why they matter in a way that anyone can understand and internalize,” Solomon Collins, Communications Associate with Data Across Sectors for Health, expressed.

Moving from shared language to shared action involves authentic community engagement. Participants were asked to differentiate between community outreach and community engagement. Participant comments included the following: “engagement is bi-directional, outreach is to engagement is with, outreach is a checklist exercise. Engagement is transformative.”

Arline-Bradley explained that community engagement has another layer of accountability and ensures that a community member is part of the larger team and that data is shared. Voice equals vote and power is shared so that community members are seen as experts and can impact change to their circumstances. Community members are experts who can impact changes and they are a resource that should warrant investment and advancing skills and develop training opportunities. True empowerment isn’t just gifts for time or focus groups, but rather creating sustainable practices in partnership with communities as a collective. 

“Getting started means having more participation, adding more people to the table, and adjusting as needed. We cannot prioritize, map, assess, hold preliminary meetings without having true engagement. Often, we get into our practice, space, tenure, and our leadership and we forget that the community we say we’re a part of brings assets to the table that many of us do not have. We can’t do the work collectively if we don’t start out with that support and humility,” Arline-Bradley said. 

As we move towards racial equity in practice, Arline-Bradley helped us recognize that it’s not an easy process, but it is necessary to create change. She challenged participants to open the door for community engagement, move beyond outreach to making it a standard part of the work. She encouraged participants to:

  • Welcome conflict because it leads to dialogue and new perspectives. 
  • Commit to ongoing learning and long-term transformation. 
  • Ensure that activities are sustainable because it will lead to transforming culture and systems. 
  • Adopt collaborative governance models which is a key difference for inclusive and equitable practices and transparency. 

“I heard Shavon speak for the first time during a New Jersey Health Initiative event – she engaged with attendees in a way that challenged us all to think about ways we could incorporate racial equity work into our daily duties, no matter our role in our organization. Afterwards, I felt inspired to learn more about her work and found she had the lived experience and expertise to provide the All In community with strategies that would help members take the necessary steps to begin applying or continue to apply a racial equity lens to collaboration and data sharing efforts to improve the health of their community.” Naomi Rich, Program Specialist, Public Health National Center for Innovations, recalled. 


“I appreciated Rev. Shavon Bradley’s presentation on a Shared Racial Equity Vision, and in particular, her clarity in comparing the difference between community outreach and community engagement. Our nationalInvest Health work thatReinvestment Fund leads seeks to help small to mid-sized cities make that distinction in their efforts to authentically engage the communities they partner with to advance equity. Rev. Bradley leaned in on not just how the boxes have been historically checked, but more importantly, what the specific tactics are that can build lasting trust and equity with residents.” Jennifer Fassbender, Director of Program Initiatives, Reinvestment Fund, said. 


“With the All In National Meeting approaching in December, it was exciting to hear Shavon guide us in understanding key differences between the concepts of racial equity vs. racial justice, as well as community outreach vs. community engagement. We look forward to applying the framework she shared to both understand where All In communities are in their journeys but also identify where we can make improvements to promote racial justice.” Anna Barnes, Program Director, with Data Across Sectors for Health and All In, reflected. 

This training is one activity leading up to the 4th Annual All In National Meeting, taking place Dec 8 – 10. Registration is now open to All In members and the general public. RSVP here.

Additional Resources:

All In for a Shared Racial Equity Vision Webinar

On October 22, 2020, All In with Shavon Arline-Bradley, Founding Principal of R.E.A.C.H. Beyond Solutions, LLC hosted a webinar training that helped define what the All In community means when it talks about racial equity. The training explored how racial equity and inclusion show up in multi-sector community collaboration and data sharing work. The training helped guide participants toward understanding what racial equity is and help them feel more confident to take the next step and act in their professional capacities to address racial equity.

Session objectives included:

  1. Participants will learn strategies to engage community members/people experiencing racial inequities in the design of community collaborations, data systems, and data-driven programs and policies.
  2. Participants will listen and reflect on a case study presented to examine how data ownership and power dynamics between organizations and community members can shape the design of initiatives to be centered in equity principles.
  3. Participants will identify how their personal and organizational beliefs and practices can support them in taking a step to address racial equity.

Resources from this training include:

All In’s Upcoming Virtual National Meeting Keynote Speaker Announced

Dr. Ruha Benjamin, Princeton University, Princeton, NJ. “Race After Technology: Abolitionist Tools for the New Jim Code”

Dr. Ruha Benjamin will be kicking off the upcoming All In National Meeting. Dr. Benjamin is a professor of African American Studies at Princeton University and author of People’s Science: Bodies and Rights on the Stem Cell Frontier (Stanford University Press). She has studied the social dimensions of science, technology, and medicine for over fifteen years and speaks widely on issues of innovation, equity, health, and justice in the U.S. and globally. Read more about Dr. Benjamin here.

Dr. Benjamin is but one in this year’s amazing lineup of inspirational speakers for the All In Meeting. Speakers will cover many compelling issues facing our communities, practitioners, and residents by sharing their stories, tools, and practical lessons. There will also be interactive opportunities for you to share your experience tackling common challenges as they relate to multi-sector community-based data sharing projects focused on health, well-being, and equity.
So, join All In: Data for Community Health on December 8-10, 2020 for our 4th Annual National Meeting. Registration is now live. The virtual space is limited to 300 participants in order to maintain opportunities for group conversations and networking.
Register here before November 30th to save your spot.

Webinar Talk-Back: Racial Equity Throughout Data Integration

By: Susan Martinez, Program Associate, Data Across Sectors for Health & Sallie Milam, Deputy Director of the Mid-States Region at the Network for Public Health Law.

Regardless of intent, data use can lead to harmful outcomes for vulnerable populations. Responses to the COVID-19 pandemic (including some featured in All In Data for Community Health’s Lessons From the First Wave) highlighted the impact of inequitable data practices, most notably in the disparate health outcomes for communities of color. From these discussions within the All In Network came a three-part series hosted by All In, the Network for Public Health Law (NPHL), and Actionable Intelligence for Social Policy (AISP) on Racial Equity throughout Data Integration. Part 1 served as an introduction to data integration and how it differs from data sharing. Part 2 delved into AISP’s Toolkit for Centering Racial Equity as well as the work of Baltimore’s Promise.  A racial equity lens in data integration can lead to implementations that are high risk and low benefit, further impeding trust (between those collecting data and the data subjects) which is a critical element in building equitable data systems.

Source: AISP, Toolkit on Centering Racial Equity in Data Integration

As a learning collaborative, All In is committed to sharing and learning from one another’s lessons and challenges to equitable data sharing. It’s important for us to meet organizations where they are in their journey. We asked the audience to rank where they felt their organization was in terms of how they’ve dealt with issues of racial equity. As evidenced below, responses reflect the wealth of knowledge and opportunity within the network.  

One of our presenters, Amy Hawn Nelson of AISP, stated during the second webinar, “Data moves at the speed of trust.” We took some time to speak with our moderator Sallie Milam, Deputy Director of the Mid-States Region at NPHL, to hear her perspective on why Racial Equity matters and where trust-building can occur in the data life cycle, including her work with Tribal communities.

All In: Sallie, thanks for sitting down with us as we reflect on these last two webinars. What practices and resources can we look to if we are interested in incorporating the concepts from the webinars into our practices?

Sallie Milam (SM): Of course, I want to begin with a big shout-out to AISP and their new toolkit Centering Racial Equity Throughout Data Integration. AISP provides information and resources to integrate racial equity throughout the entire data lifecycle as data are shared and linked by the individual. Because centering racial equity is a continuous process, this toolkit provides questions to ask at each stage, for example, lists of positive and problematic practices and work in action. Finally, activities are included to provide additional guidance around who should be at the table, mapping assets and engaging the community, and identifying root causes through factor analysis.

To prepare for the conversation around centering racial equity through data sharing and integration, the first webinar in this series highlighted AISP’s Introduction to Data Sharing & Integration. This intro offers a comprehensive and accessible overview of useful definitions, frameworks, privacy laws, data sharing agreements, use cases, and nuts and bolts guidance for the variety of considerations encompassed with beginning data sharing. 

All In: Throughout these past two webinars, the subject of legal issues (data privacy and the like) have emerged. Could you talk about how you see public health law interacting with this issue (of racial equity in data sharing)?

SM: Law and policies define all aspects of the data life cycle, including collection, use, sharing, and destruction. Data owners may not be able to share data needed to address racial disparities due to restrictions or ambiguities within law or policy. The Network for Public Health Law offers an equity assessment framework for public health laws and policies. This framework assists in identifying issues in the drafting, design, or implementation of a law or policy that could have a disproportionate impact on different population groups. The framework is meant to guide a discussion around how equity is considered in both process and outcomes and can help identify opportunities for improvement. This equity assessment tool is a critical tool at a critical time.

Law may also protect racial equity by prohibiting data sharing in certain situations. Concern over immigration enforcement can prevent immigrants from obtaining needed health care. Many immigrants worry that health workers will share their undocumented status with immigration authorities. Removing barriers to immigrants’ utilization of preventive and other health care services is important for public health. This Network for Public Health Law issue brief explores relevant federal and state health privacy laws and how they apply to undocumented immigrants and provides information on health care providers’ rights and responsibilities when providing health care to immigrants.

Emerging frameworks to enable data sharing across the social determinants of health hold promise to improve racial equity. In this report, SIREN illuminates where health care organizations share personal information outside of healthcare with other sectors – such as housing programs, school health programs, and social service programs – while protecting individual privacy in compliance with federal and state law. De-identification is also a data sharing strategy that advances health equity where it is useful for a community and population where individual-level data are not needed. 

All In: Another emerging topic throughout the past two webinars has been ethical considerations to data sharing, particularly how data practices impact Tribal communities. What are some strategies to center racial equity with Tribal Nations and their peoples?

SM: It is essential to begin with honoring and respecting Tribal data sovereignty. Tribal nations are separate and sovereign jurisdictions. As sovereign nations, Tribes have inherent authority to protect their Tribal citizens’ health and wellness and provide public health services as they determine best. Read more about Tribal public health law and Tribal self-determination. To govern public health service delivery to their people, Tribal nations have the authority to administer the collection, ownership, and application of their own data, which is known as indigenous data sovereignty.

Where Tribes do not have the capacity to collect data on Tribal citizens themselves, they may partner with other jurisdictions, such as state governments. Data sharing between state governments, Tribal Epidemiology Centers, and Tribes should be grounded in a strong data governance program. Data Governance Strategies for States and Tribal Nations. A first step in establishing a data governance program is the adoption of a principle-based framework that aligns with the organization’s mission, vision, and values. 

State governments and Tribes might evaluate starting with the NCVHS Stewardship Framework which identifies eight elements:

  1. Openness, transparency, and choice – what information is being collected and why, consent options
  2. Purpose specification – the initial purpose of the data collection and its downstream uses are defined and made explicit at the point of collection
  3. Community engagement and participation – whether and how communities should be involved in decision-making about data
  4. Data integrity and security – evaluation of confidentiality, integrity and availability risks to the data and a plan to address those risks 
  5. Accountability – identification of a person or entity responsible for data governance at each stage of the data lifecycle
  6. Protecting de-identified data – ensuring that data are de-identified, as appropriate, and have administrative safeguards, as needed
  7. Attending to the risks of “enhanced” data sets – ensuring that re-identification risks are appropriately managed when data sets are merged
  8. Stigma and discrimination – ensuring that data uses don’t stigmatize or result in negative attitudes towards communities

This Fact Sheet provides considerations for state governments and Tribes’ evaluation of a data governance framework, meaningful Tribal partnership and consultation in data sharing, and best practices for data sharing between Tribes and state governments. All In’s Lessons from the First Wave offers real-world examples of successes in Tribal, Tribal Epidemiology Center and state government collaboration and communication around data sharing. Honoring and respecting Tribal data sovereignty is critical for Tribes to protect the health and wellness of their citizens and to achieve health equity.

All In: Finally, in your own words, what do you think is lost if we don’t commit to equitable data practices?

SM: If we don’t commit to equitable data practices now then we continue to perpetuate systemic racism. Existing policies, practices and laws prevent BIPOC from having the same access to conditions needed to be healthy as White people while creating advantages for White people. National Institute for Health Care Management (NIHCM) Foundation. These needed conditions are social determinants of health and include socioeconomic status, education, neighborhood, and the built environment, employment, social support networks and access to health care. Beyond Health Care: The Role of Social Determinants in Promoting Health and Health Equity. Systemic racism is not new and exists within the fabric of systems designed to support our most vulnerable individuals. 

The net worth of a White family is typically 10X greater than a Black family. This disparity underscores the impact of 246 years of slavery, violence against Black individuals, and racial discrimination. Today in the US, black children are 2X as likely to live in poverty as white children. While designed to provide cash assistance for low-income families, Temporary Assistance to Needy Families (TANF) contributes to the Black-White poverty gap. The higher the percentage of African Americans in a state, the lower the percentage of money is actually spent on helping them with basic expenses. A number of states spend federal TANF money on ancillary programs instead of providing direct cash assistance to individuals. These ancillary programs include support for marriage formation, reduction of out-of-wedlock births, and attendance at a Christian summer camp. Welfare Money Is Paying for a Lot of Things Besides Welfare

State governments are building large integrated eligibility systems to better administer benefits to vulnerable individuals. Some estimate that these systems cost approximately $6.5B per year to operate and improve. Integration of health and human services programs promises a client-centered administrative culture and a more seamless customer experience across programs. While these massive data integration engines are new, many perpetuate the systemic racism already built into stand-alone agency-specific data systems and agency policy. 

Equitable data practices are needed to guide governments to steward their resources so that everyone living within their boundaries counts and has the same opportunities to be healthy. Black lives matter.

All In: Thanks again for taking the time to speak with us. We’re looking forward to checking out Part 3 of this series!

Recordings and materials for Parts 1 and 2 of the All In and NPHL Webinar Series on Racial Equity Throughout Data Integration are available on the All In Online Community (create a profile here. Register here to watch Part 3 of this webinar series, live on October 14th, 3 pm ET. 

All In: Data for Community Health Statement on the George Floyd’s Death & Nationwide Protests

At All In, over 200 collaborations are working together to promote community health through data, collaboration, and community leadership. Driving this effort is the fight for racial justice and health equity – without which people cannot reach their optimal level of health and communities cannot thrive.

Over the past week, the brutal murder of George Floyd, the police violence in the face of legitimate protest, and the unjust and ongoing oppression of black, indigenous and other people of color (BIPOC) reflect centuries of systemic racism in our country. We treasure our shared community and the opportunity we have to fight together for equity, anti-racism and justice.

We are actively seeking new avenues to reflect these aims in our shared work. On the most recent episode of the All In podcast, Dr. Rhea Boyd referred to the disproportionate COVID-19 deaths of black and brown people as “the epidemic within the pandemic.”  It has inspired us during this tumultuous time in our nation and we encourage each other to listen, reflect and take action.  Black Lives Matter.

Tackling the Opioid Epidemic: Leveraging Linked Datasets for Insights and Informed Action

Communities across the country share a common sense of urgency to take action against rapidly escalating rates of preventable deaths associated with opioid use. While an increase in clinical opioid prescriptions and the introduction of synthetic opioids into the drug supply partially explain the national uptick in overdose and addiction rates, knowledge gaps surrounding more localized factors related to opioid use, addiction, overdose, and treatment makes developing responsive and evidence-based interventions a challenge for states and communities.

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