From The Field D E C E M B E R 1 7 , 2 0 1 2 Solving the Connecticut Data Deficit through Collaboration ALYSE B. SABINA, M.P.H. Program Officer, Aetna Foundation JENN WHINNEM Communications Officer, Connecticut Health Foundation W ithout data that could be monitored over time, COLLABORATION how could those interested in improving the Collaboration comes with abundant opportunities for organi- health of Connecticut residents track progress or zations to increase their impact. And yet, an irony in the field measure success? This was the question the Aetna Foundation of philanthropy is that we often ask our grantees to and the Connecticut Health Foundation (CT Health) asked collaborate, but we often do not “walk the talk” ourselves. on a Monday afternoon in the summer of 2010. Both founda- Collaboration is hard work. It takes time and demands tions, along with several other health funders in the state, difficult conversations around delicate issues, such as roles were making progress on various health issues, but lacked and responsibilities. consistent data to measure progress in reducing health Yet, the ability to measure the health of Connecticut disparities and the impact of philanthropy’s efforts to advance residents would make collaboration worth the effort. To find health equity. partners for the work, the Aetna Foundation and CT Health Aggregate health data in Connecticut paint a positive picture brought the idea of a patient health survey to the Funding of the health of its residents. Yet, when you stratify racial and Health Affinity Group (FHAG), a consortium of the ethnic data, a huge gap emerges between the majority popula- Connecticut Council for Philanthropy (CCP), a statewide tion (whites) and racial and ethnic populations. Moreover, existing public data were fragmented, difficult to access, lacked association of grantmakers. a patient’s perspective, and were not specific enough to Many foundations were excited about the opportunity but Connecticut to be useful. coming together around a common theme took some time. In recent years, several national foundations, such as Although the members of FHAG have “health” in common, The Henry J. Kaiser Family Foundation and The each funder approaches health from its own unique mission. Commonwealth Fund, have conducted large-scale surveys Ultimately, not everyone signed on. We learned that it was of patient health that made it possible to illustrate the health not realistic to expect all 20 members of the group to fund a status of specific demographic groups within the larger popula- statewide survey. tion and demonstrate philanthropy’s impact on improving Ultimately, five foundations— the Aetna Foundation, CT health and health care. Equally as important, survey results Health, the Donaghue Foundation, the Foundation for became important sources of information for many other Community Health, and the Universal Health Care organizations, stakeholders, and advocates looking to change Foundation of Connecticut (Universal)— agreed to collabo- institutional systems and develop public policies to improve rate and move forward with a statewide patient health survey health outcomes. in the fall of 2010. Several foundations were eager to commission a similar As the scope of the survey changed, another funder came patient health survey focused specifically on Connecticut. But back into the fold. Initially, the survey was not going to include we understood that implementing a study modeled on these children due to cost issues, and the Children’s Fund of national surveys would be very expensive and beyond the Connecticut, which works solely on issues related to children, resources of any one foundation. Instead, multiple funders opted not to join at that time. In the process of the survey would need to come together to pool financial and human design, however, this changed, and the Children’s Fund was resources to make it happen. asked to come back to the table to be a part of the collaboration. We each had our own way we wanted to employ the survey full proposal. Ultimately, we selected the University of findings. CT Health and the Aetna Foundation focused on Massachusetts Medical School Office of Survey Research to racial and ethnic health disparities, while Universal was receive the grant. interested in health reform more broadly. The Foundation for The hand-off was a huge transition for everyone involved in Community Health prioritized the health of rural populations, the project. We began to think about maintaining our momen- while Donaghue wanted to target patient experience data. The tum and clarity, and keeping people engaged and on message. Children’s Fund was interested in access to community-based Simultaneously, the CEOs of the collaborating foundations health and mental health care for children. were transitioning the day-to-day management over to project Despite the diverse priorities in the collaborative, the fact managers and senior program officers. We were also inten- that we still came together demonstrates our commitment to tional about making the grantee’s experience of partnering the value of collaboration and the importance of health data with multiple funders as frictionless as possible. in shaping future foundation initiatives. We experienced a microcosm of the “who does what?” conundrum even with communicating to the media about the IMPLEMENTATION project. As communications staff across the organizations came together to determine who would do what, there was a desire With the collaborative formed, the time came to hash out the to both not step on toes, but to make sure each organization delicate details. First and foremost was the issue of finances. could highlight its involvement. The results were positive: we Who would contribute what? The endowments of our whetted our media contacts’ appetite for the results to come, foundations varied widely— would putting in the most shared contacts, and maintained a consistent strategy and amount of money entitle that foundation to dictate the messaging in our press releases. Seven media pieces were also direction of the project? Or would everyone equally share picked up by national and local media in radio, print, and decisions around survey development? on-line publications. We hope the de-identified data set will be To determine the financial piece, we first laid out the broadly available to researchers, stakeholders, advocates, and scope and scale of the project and developed a budget others by early 2013. estimate. With that number firmly in place, we were able to One outstanding question remains— who owns the data and engage in frank conversations about what each of us could future follow-up surveys? We are interested in transitioning contribute. this information to the Connecticut Department of Public Collective ownership can become obscure ownership if Health. We know, however, that state resources for this type of roles are not well defined. We decided on the creation of a data collection can be difficult to guarantee in the future. The memorandum of understanding that specified equal votes for collaborative will need to evaluate this and other ideas down all, named a project director, and named CCP as a fiscal the road. agent for the project. Survey design and data usage were other discussion points. RECIPE FOR SUCCESS We recognized that many surveys used provider-reported data to generate conclusions about health. Not all of us were We learned in real time that several ingredients are important satisfied that this was the most accurate measure of residents’ for a successful collaboration. Big-picture, persuasive health. Instead, we decided to use resident or patient self- visionaries are needed to guide and create commitment reporting to measure the health of the state. And, as we were among interested parties. Laying the groundwork of executive interested in disparities data, we were deliberate about ensur- logistics early on in the collaboration leads to fewer issues ing appropriate oversampling of underserved communities, down the road. What makes these ingredients stick together including minority populations, people with low incomes, are a sense of trust, open and candid conversation, and a sense and the uninsured. of excitement about the work and its outcomes. And, We also wanted to ensure that data were used in a way that it does not hurt to have a grantee (or fiscal agent) who has created change. Ultimately, we decided that a series of policy the patience and good will necessary to work with a group of briefs outlining survey results would be the most efficient and funders. effective method of disseminating survey data. Working out these details took approximately eight months. The result of our hard work was a stronger, more clearly defined collaboration with a solid groundwork from which to launch the project. MOVING FORWARD With these parameters firmly defined, we created a call for Views from the Field is offered by GIH as a forum letters of intent to conduct the survey, and then asked for a for health grantmakers to share insights and experiences. If you are interested in participating, please contact Faith Mitchell at 202.452.8331 or fmitchell@gih.org.