In applied research, data is foundational. In this commentary, we explore the data access problems researchers face, the opportunity for public-private collaboration to advance research access, and what factors make it successful.

We at ClearCare have been delighted to work with the Stanford Center on Longevity and Comfort Keepers on Sightlines research.

Context: Data Challenges in Caregiving and Older Adult Research

Within most fields of research, and certainly within caregiving research, few robust data sets exist with consistency and ease of use. Two prominent ones are from Medicare and Medicaid. As a result, most peer-review published aging research has centered on one of these sources for data.

However, using public sources has major drawbacks. For instance, Medicare reports primarily on medical care, not social determinants of care. Moreover, Medicaid data access is spotty, as each of our 50 U.S. states report variables differently and large data sets have historically only been available four or more years after being collected.

What has resulted are enormous gaps in research. Non medical factors and outcome measures are largely ignored by researchers out of a lack of data. Moreover, research data on caregiving is largely on a multi-year lag. Given the speed of health and social policy changes, the use and adoption of these findings may be outdated.

How Our Public-Private Collaboration Formed

When I was a doctoral student at Johns Hopkins, I blindly stumbled on the opportunity to use a private data source. It was a treasure trove for research that advanced the field and landed me a rich and unique set of dissertation findings. Most importantly, it was immediately used by practitioners.

When I had the opportunity to cofound a technology company that keeps real-time records of non-medical home care in the field, the academic in me instantly saw the potential for research data. Moreover, we had a forward-thinking management team and eager partners in ClearCare’s customers.

The genesis of the Stanford Center for Longevity research stems from a conversation ClearCare’s CEO Geoff Nudd had with the leadership team at Comfort Keepers. They had been looking for a leading university research partner and were open to the research topic.

We approached colleagues at SCL, and after a first meeting of our teams, we knew that there was a cultural and vision “fit.” We began exploring research topics and potential questions immediately.

In summary, the core factors that enabled good collaboration included:

• System or technology architected for consistent data collection (ClearCare)
• A good customer or partner with access to data collection sites (Comfort Keepers)
• “Fit” in team culture and commitment (ClearCare, CK, Stanford Center for Longevity)
• On private side: Supportive management team led by CEOs who prioritize research
• On public/academic side: Supportive lab director who values impact in research

Researchers should have the freedom to build on previous research to advance the field methodically.

Factors that make collaboration successful

The process of collaboration can be seen as dancing the tango. It is not an easy dance and there is no explicit choreography, but when done well, it feels and seems beautiful. When our three sides “debriefed” our public-private partnership, we all commented how smoothly and nicely things functioned in this collaboration. Let us use the framework of a tango to explore why:

A clear lead in research

Just like the tango, there must be a lead. Here, it is the lead who defines the research questions and framework. In our project, the researchers at Stanford Center for Longevity took the lead. I would argue that it should always be the case. Researchers should have the freedom to build on previous research to advance the field methodically. Moreover, we avoid the conflict of interest traps of “industry-sponsored research.” What emerges is more graceful to see and share.

Regular practice sessions – and the upfront commitments to show up

Ask any competitive tango couple, and they will readily share their practice schedule with you. In the case of this ClearCare, Stanford Center for Longevity, Comfort Keepers research, we scheduled check-in sessions as follows:

• Spring/Summer 2016: monthly meetings for getting to know what exists as potential research assets and what research topics are possible
• Fall 2016: weekly or bi-weekly tactical meetings to get things done (e.g., IRB submission; summary statistics from the ClearCare system of emails, geographies, etc.; communication to field locations; survey instrument design and testing; survey platform testing; 2 batch survey runs; full survey)
• Winter 2016 to now: scheduled as needed to review questions that arise

Coordinating critical steps in advance

Ask tango experts, and they will tell you that they coordinate the “milestones” to the dance as well as the complex steps in advance. In the case of our research collaboration, we coordinated these critical steps, including:

• What is necessary for the data collection to be considered successful?We aligned on what sample size we needed for the power/validity of findings. We hypothesized conversion rates and tested it with two test runs. Moreover, as ClearCare pulled email addresses from the system to send, we saw that the random sample did not include agencies in all Comfort Keeper states, so we pulled more locations to total 37 states. Meanwhile, Comfort Keepers clearly communicated the upcoming research across their network in a way that would be exciting to franchisees.
• Tactically, how do we know the survey instrument and process will work?After IRB approval, we reviewed survey platforms. When it became clear that it would be easier for Stanford to use Qualtrics to send the emails to survey recipients, we applied for and got an IRB change. We also chose two different locations (in Florida and Virginia) to deploy the survey, monitored completion rates for acceptability despite a lengthy survey, and noted improvements to implement in the full survey deployment.
• When do we deploy the full survey to 2,000+ email recipients?We chose to avoid holidays such as Thanksgiving and wanted to be completed before the late December holidays. As a result, we worked our timeline backwards (e.g., when do we need email lists pulled from ClearCare by, when does Comfort Keepers need to communicate to franchisees, etc.)

A “big day” to work towards and practice runs ahead of time

Many tango dancers practice and work towards a “big day” in a competition. In our case, the collaboration teams circled a date in advance for the “big day” – i.e., the survey drop to 2,000+ email addresses. Just as tango dancers make sure their music is loaded properly and costumes are just so, our teams did two trial runs – with Comfort Keepers-owned locations in Virginia and Florida – to make sure tactical challenges would not emerge on the “big day.”

The gains to research and applied practice are huge in working together to arrive at unique data sources.

Conclusion

Many companies as well as academics shy away from public-private partnerships. But the gains to research and applied practice are huge in working together to arrive at unique data sources. Our great appreciation goes to our collaboration partners at Stanford Center for Longevity as well as Comfort Keepers. We look forward to sharing more insights in the days to come. Please let us know if you have any questions by leaving a comment!