"Torture the data, and it will confess to anything." – Ronald Coase, Economics, Nobel Prize Laureate
In this issue, we're taking a temporary hiatus from our strategic member engagement activities while we continue to work behind the scenes to analyze the inputs and data to date and make sense of using the results to craft our next strategic plan. In a few weeks, we'll circle back and share and summarize what we have learned. In addition to the data analysis being done now, we are actively adding key inputs from our closest partners, including federal agencies, foundations, academic institutions, and other funders. To round out the member and partner inputs, we'll be engaging the AMCHP staff in a half day retreat next week to solicit staff perspective on the future activities of AMCHP.
While contemplating another topic to address, the subject of data in general came to mind. Data has been integral to the strategic planning initiatives over the past six months. Interestingly, just this past week – in five short days – data and information also have been front and center in the form of new reports released in the media.
From the young age of 15, I learned to value data and power it had to influence business decisions and outcomes. Working for a lumber yard in my first job, I was an accounting assistant and a key punch operator. In the early 1980s, key punching sales from the lumber yard and using a legacy IBM mainframe processing unit the size of a 10x12 room, data from sales drove inventory restocking, the sales price of lumber and products, marketing and ad campaigns, salesman commissions, and on and on. Data was key to making significant business decisions. Whether it was this early first foray into the world of data management, or whether some of us are meant to be highly analytical, I have truly embraced data informed, data driven decision making throughout my career.
The new examples from this week shared here should remind us all that as much as there is passion and love for data and how we can use it to make our work and lives easier, more productive, and improve the lives and health of people, there will always remain interesting questions that will continue to perplex us around privacy and other important data management issues.
This week, the Robert Wood Johnson Foundation (RWJF) released findings from its Data for Health initiative that explored how information and data on health can be harnessed to help build a Culture of Health where everyone has the opportunity to live longer, healthier lives. With the U.S. Department of Health and Human Services (HHS), a series of "Learning What Works" events were held in five cities across the country to gather community-based insights. You can read the report here. During a launch event this past week, it was very interesting to learn about some newer concepts associated with the potential power of individual data if data were to be aggregated for research purposes. When you consider the number of individuals with iPhone and Android apps that are now tracking data ranging from calories burned, food consumed, exercise, heart rates, exercise, and so on to track health and wellness, the numbers are astounding. Imagine if individual data on these apps were aggregated and researchers were allowed to use that voluminous data to conduct research on any number of public health issues? It is thought that this can be a game changer in basic research and lead to major advancements in identifying population health issues that can then lead to changing behaviors.
In fact, just after attending the launch event for this report, I was watching one of the final four NCAA games and witnessed how this might work in reality. Somehow, those attending the Duke v. Michigan agreed in aggregate to allow their FitBit data to be aggregated so that the game announcers could track their heart rates. Whenever a player made a dunk during the game, the FitBit groups' heart rates soared from 70 to 140 hpm.
It's easy to imagine some of the challenges that might be presented through these approaches including individual data privacy issues, ensuring that data sets are representative of the most diverse of populations and do not create even more health equity challenges (e.g. are those populations in most need even likely to own and/or use smart phones and apps in this way), and is there enough trust to ensure that private health information won't be used to somehow further disadvantage individuals (e.g. denial of insurance or over-charging of premiums for those with health conditions), etc.
The last example from last week has more to do with a recognition of a severe data gap. The FBI released a statement that they now realize there has not been proper tracking and aggregate reporting on crimes related to police shootings. State system data is not aggregated properly to allow for national data reporting and analysis and it's often likely that certain racial and ethnic data regarding police shootings (including whether the victim is a police officer or the individual being arrested or pursued) simply is not recorded at all. The consequences of this data gap are significant because there is no information on the frequency of these occurrences or even if there are real and identifiable issues associated with racial/ethnic profiling and where those might exist. We do not know how often this happens, where it happens, and to whom it happens. This is a scenario where data could be easily used to help identify geographical or other areas of concentrated instances of this type of violence and provide for targeted training and education in the law enforcement systems and within the community.
Undoubtedly, there are countless other examples that could be shared about the critical nature of data gathering, data use, decision making and so on. The most important thing to bear in mind, I believe, is that data is not a solution for anything in and of itself. Careful consideration has to always be given to the reason for collecting data, its usefulness to drive decisions, and its potential impact on behaviors and actions and ultimately outcomes.