This commentary is available as a PDF here:
This is the first of what I hope will become more frequent updates on issues of interest to the Step Two Policy Project (S2P) readership. Since we launched the S2P website in September 2023 we have posted two longer Policy Briefs on Substack – Democratization of Health Data, Information, and Policy Analysis; and Supporting Individuals with Complex Needs; as well as a shorter Issue Brief – Maximizing Federal Healthcare Shortage Designations: Increasing Access to Care for Individuals with Intellectual and Developmental Disabilities in New York. We’ve been pleased by the feedback we’ve received on these papers.
What makes S2P different from the many other good organizations focused on health policy in New York is that our research is tied to specific recommendations for New York State policymakers. Our objective is to engage those in New York State government who are responsible for policy decisions involving healthcare, behavioral health, and health-related human services – as well as the stakeholders and experts in those areas who are most knowledgeable about these policy issues.
Each of the Briefs we produce is based on deep research and empirical data, where available and relevant. Our Policy Briefs are tackling big topics. In most cases, we will be publishing a series of papers addressing aspects of the subjects in more detail. Our conversations with policymakers, stakeholders, and experts help inform how we should prioritize addressing certain topics in more depth.
Today, we are publishing our second Policy Brief under the topic area of Health Data and Information on the Step Two Policy Project Substack page. This paper, titled Categories of Health Data and Information, elaborates on two aspects of the broader issue:
First, we want to clarify that “health data and information” is a shorthand reference that covers not only data and information concerning the physical healthcare delivery and payment systems, but also clinical data for patients and specific populations, behavioral health (including mental health and substance use disorders), and health-related human services (such as healthy food and supportive housing) that affect social determinants of health.
Second, because health data and information (broadly defined as described above) is an umbrella term that covers such a wide range of various sources and uses of data and information, it is helpful to separate this broad universe into various categories. We think of “health data and information” as falling within at least four distinct categories. These include data and information related to:
the healthcare delivery and payment system, as captured through service delivery, claims, payment models, insurance coverage, and health system financial reporting;
patients, providers, and populations served by specific providers or payers, as captured through clinical encounter health information systems such as electronic health records and health information exchange networks;
public health and social determinants of health for general populations, as captured through public health reporting, health-related human services reporting, and public surveys; and
consumer empowerment platforms, such as those related to price transparency, individual cost-sharing, quality of care across plans, and provider accessibility.
Our new Policy Brief, Categories of Health Data and Information, elaborates on these distinctions.
Given the current level of transparency of health data and information that exists in New York, the entire challenge will not be addressed overnight. Categories of Health Data and Information reiterates our most immediate policy recommendation in this area, which, if adopted, will greatly increase the availability of useful data and information concerning the healthcare delivery system. That immediate recommendation is as follows:
“The State should establish an Executive Branch Office of Health, Behavioral Health, and Social Determinants of Health Data Information and Analysis. The Office would have a mandate to gather this data and information from the relevant State regulatory agencies and synthesize the information to present a comprehensive picture of the healthcare delivery system in New York. The extent of collection and publication of health data and reporting of health information should be at a level that is at least as comprehensive as data and information published by best practice states such as Massachusetts (through its Center for Health Information and Analysis). Because health, behavioral health, and services related to social determinants of health increasingly need to be delivered in an integrated fashion, the Office would work to promote data and information exchange among the silos that exist today among DOH, the “O” agencies (OMH, OASAS, and OPWDD), and the Department of Financial Services.”
A 2024 State of the State proposal to create such an executive-level Office would also present an opportunity to establish a culture of greater integration of service delivery in New York across the multiple silos that affect health, behavioral health, and health-related human services. The current lack of an optimal level of integration, of which the negative effects of the State’s existing regulatory silos are a continuing factor, is an issue that Governor Hochul’s newly formed Commission on the Future of Healthcare should review over the next two years, given the importance of greater integration to the future of healthcare.
The next Brief in the Data and Information series will present more detailed recommendations for the second category – “data and information related to patients, providers, and populations served by specific providers or payers.” The issues in this area are more complicated because of the technical, as well as policy challenges, that are raised by working with clinical health information systems. It will probably take the better part of a year to develop a comprehensive roadmap for reform in New York. Our next Brief in this series on Health Data and Information will offer more background on these challenges and offer a “strawman case” for reforms that the Administration and health stakeholders should consider.
In addition to engaging policymakers in New York, Sally, Adrienne, and I hope that we can contribute to the stakeholder and expert community working on the issues we cover, some of which are rather esoteric. The Issue Brief Sally and Adrienne wrote titled, Maximizing Federal Healthcare Shortage Designations: Increasing Access to Care for Individuals with Intellectual and Developmental Disabilities in New York attracted the attention of, among others, stakeholders in Pennsylvania who are exploring how to address the same issues related to individuals with intellectual and developmental disabilities (IDD). The Issue Brief examines the challenges that exist for New Yorkers with IDD in accessing healthcare services and the disparities in health outcomes that result from that inaccessibility to care. The Brief also describes the process and the implications of Federally designating areas and populations of New York as medically underserved or as experiencing a shortage of healthcare professionals. Finally, the Brief makes recommendations for how New York can maximize the Federal shortage designations to improve access to care for New Yorkers with IDD.
You may be receiving this note by email, which we will continue to send unless you say you are not interested. But this note and all our writings are also published on Substack, which is a wonderful platform for thoughtful postings and essays on just about any subject. Substack enables you to subscribe to the Step Two Policy Project’s posts. It’s free, and although we are never going to have hundreds of thousands of followers, we appreciate everyone who subscribes and engages with our work.
One of the advantages of being small is that we can engage with almost everyone who is interested in our work. Please feel free to reach out to us at our personal contact information or at info@steptwopolicy.org.
Paul Francis
December 14, 2023
Comments