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Powering Communities While Protecting Individuals

Johnson Center Sep 1, 2019
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Powering Communities While Protecting Individuals Giving Compass
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Communities working toward equitable change are increasingly turning to data to help them understand and solve their biggest challenges. Nonprofit organizations and public entities are using information about residents — including race, sex, age, employment status, income, health, and even the latitude and longitude of residences — to illuminate persistent inequities and develop strategies to eliminate them.

Detailed data, broken down by characteristics like race and gender, are powerful for uncovering the stark inequalities that might otherwise be hidden by total population averages. Such disparities are often even more apparent when data are mapped to show outcomes in particular neighborhoods.

Collective impact and community data organizations, like those belonging to the Collective Impact Forum and the National Neighborhood Indicators Partnership, are well aware of these truths. In West Michigan, for instance, headlines celebrating a growing population and vibrant economy often give the false sense that prosperity is experienced equally by all residents. Data published online by KConnect (2018), a local collective impact organization, and from the Johnson Center’s VoiceKent and Community Profiles research tools (2018), demonstrate that disparities in education, employment, income, access to nutrition, health care, and even feelings of safety and belonging, among other resources, are profound in the region.


Learning and benchmarking are key steps towards becoming an impact giver. If you are interested in giving with impact on Nonprofit Sector take a look at these selections from Giving Compass.

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    Systems Change Through a Trauma Lens

    Giving Compass' Take: • Patsy Carter and Andrea Blanch explain how the Missouri Model uses the trauma lens to inform systems change.  • How could this model be used in your work? What issues are most suited to this model?  • Learn how acknowledging trauma can help improve communities.  It’s no secret that our health, education, and social service systems are failing the people they intend to serve. The US infant mortality rate is higher than in most developed countries, and the gap is widening. American children’s educational performance ranks very low in comparison with the 35 other Organisation for Economic Co-operation and Development (OECD) countries. The United States incarcerates people at a rate far higher than that of any other nation, and prisons have become the de facto mental health system for many people diagnosed with serious mental illness. Intergenerational poverty and violence are persistent, particularly among groups that have faced historical discrimination. More recently, the opioid epidemic has presented complex social challenges that are extremely difficult to unpack and address. While a majority of participants in social and educational programs make progress, some flounder. Over time, this pattern has reinforced the mistaken belief that social problems are inherent in individuals, rather than created and sustained by environmental conditions. The science of trauma has opened new pathways for understanding and addressing social problems resistant to traditional programs and services. Beginning with the seminal Adverse Childhood Experiences (ACE) study, which the US Centers for Disease Control and Prevention published in 1998, a growing body of research has demonstrated that adverse experiences and chronic stress, particularly in childhood, can harm the developing brain. Repeated exposure to perceived danger alters the connections between brain cells and floods the body with hormones. These biological changes accumulate over time and can have long-term consequences for emotional function, regulatory capacities, physical health, and successful performance in a variety of domains, such as education, parenting, and employment. Research in the field of epigenetics has even suggested the possible biological transmission of trauma from generation to generation. A mix of genetic and environmental influences determines physical and mental health. This combination of factors helps to explain why individuals or groups that are exposed to the same trauma may experience different outcomes. Treatments, environments, and cultures that do not recognize the biological impact of repeated trauma may be ineffective or even cause additional harm by retraumatizing those they serve. Behavioral health organizations are increasingly providing evidence-based, trauma-specific therapies. However, therapy alone does not eliminate the risk of an organization’s activating a trauma response, nor does it address the wide range of consequences of traumatic exposure. Trauma-informed organizational models are necessary to address these more systemic issues. The changes that an organization needs to make to become trauma-informed are difficult to pinpoint and even harder to sustain. A developmental model of trauma-informed organizational change, such as the Missouri Model, can make the process seem less daunting by providing options and a road map for the journey. By breaking down the process and identifying primary indicators of change, a trauma-informed developmental approach can help guide organizations and communities toward the deeper, systemic change required to address seemingly intractable social problems. Read the full article about a trauma lens for systems change by Patsy Carter and Andrea Blanch at Stanford Social Innovation Review.


As the available data become increasingly granular, however, even data that do not include identifiers like name and address can identify individuals indirectly through combinations of demographic and geographic variables. In relatively homogeneous areas, it would not be difficult with just a few data points to identify a Jewish resident living in a majority Christian area, for instance, or an African American resident in a predominantly white neighborhood.

To be clear, this should not discourage the use of granular data. Granular data is critical for elevating the experiences and voices of groups that have historically been disenfranchised and excluded from development plans. Making such data broadly accessible ultimately empowers communities, providing the information they need to approach systems-level change strategically.

However, this trend of making increasingly granular data publicly available for community use simultaneously raises important questions about individuals’ rights to privacy and the security measures and other steps taken to protect individuals’ information.

As community data initiatives become increasingly sophisticated in their use of granular data and endeavor to generate knowledge that can be used by other communities, they will have both legal and ethical obligations to safeguard the identities of individuals whose data they use. Individuals’ educational and health related records, for instance, are protected by FERPA and HIPPA legislation, which include heightened standards for data privacy and security. Practically, this has implications for the technological systems of those handling the data and their methods of data transmission and storage. While maintaining secure data systems and the technology staff to support them might be cost prohibitive for the nonprofit organizations that most often lead community data initiatives, university and/or health system partners can play an integral role in these initiatives by providing the technological infrastructure required to utilize individuals’ data securely.

Depending upon whether the data efforts meet the federal definition of research, community data initiatives may also be subject to oversight by an Institutional Review Board (IRB) — an independent body tasked with ensuring ethical research practices that protect the rights and wellbeing of individuals who participate in or contribute personal data to research efforts (45 CFR 46). Research institutions like medical and academic centers typically have internal IRBs that oversee all internal research. However, research that is conducted outside of a research institution is not exempt from federal requirements. Such research may receive review by partnering with an affiliated researcher, at a university or hospital for example, or by contracting with a commercial IRB for review services.

This is already happening, as community data initiatives often seek out the expertise of researchers who are associated with institutions that have their own legal and research review bodies. As leveraging granular data to inform collective impact continues to grow in popularity, more and more of these initiatives will naturally fall under the purview of IRBs. On one hand, this may create additional challenges in already challenging work, particularly when IRB recommendations run counter to community plans.

For example, an IRB might require informed consent procedures for would-be survey participants, which could increase costs and timelines, and seem like an unnecessary step to community partners.

However, IRB involvement should also be viewed as an opportunity. As described above, community data initiatives can benefit significantly from partnership with researchers who are embedded in large institutions because these researchers bring with them valuable resources like advanced technology infrastructure, legal counsel, and research review committees that smaller community organizations might not have access to otherwise.

By working together, research institutions and community organizations can use detailed data in ways that inform the equitable systems change that historically disenfranchised community members deserve, and at the same time ensure that these individuals are not further marginalized in the name of data. Only by balancing the imperatives of community empowerment with protections for individual rights and privacy can true systems change occur.

_______

By Erica Czaja, Director of the Community Research Institute, Dorothy A. Johnson Center for Philanthropy.

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