Health and Human Services gets advice for building data capacity on one of its top priorities

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For several years, the Centers for Medicare and Medicaid Services has been shifting its payment incentives away from transactions and toward patient outcomes. The Department of Health and Human Services has an office dedicated to building data capacity necessary for doing what it calls patient-centered outcomes research. That office enlisted the National Academy of Sciences to give HHS guidance on building data capacity. Now the report is out. For details, Federal Drive with Tom Temin spoke with George Isham, the committee chair and a senior fellow at the HealthPartners Institute.

Interview transcript:

Tom Temin: Now this is an interim report, give us the context here and the sense of where this fits in what you will finally do for HHS.

George Isham: Well, the report summarizes the committee conclusions from the first of three interim workshops. And then there’ll be a final report that’s issued. HHS benefited from the reauthorization of the PCOR [patient-centered outcomes research] Trust Fund, and that they have 4% of that trust fund to enable data structures to enable research. And that money is authorized, I think, to be expended over the next decade, ’til 2030. So they’re eager to get their strategic planning done and have input. So we designed three workshops, all of which have been now carried out. This is the first for which there’s a report. And they asked us actually to summarize the workshop, as well as provide our high level conclusions relative to that report. That’s where we stand now, we have two more to issue the report on and then the final one we’ll integrate all of the findings and address the overall sort of findings and conclusions of the committee. And that will be available early next year.

Tom Temin: Fundamentally, this office, the Assistant Secretary for Planning and Evaluation, this is an HHS, not a CMS office. So it’s a little higher level than CMS within the hierarchy. What fundamentally are they looking to do here?

George Isham: Well, I think you’ve pretty much almost covered it as well, because they do coordinate this portfolio of projects for building data capacity to conduct patient centered outcomes research. And they asked us to identify issues critical to the continued development of data infrastructure for patient-centered outcomes research and contribute to the development of their strategic plan for the expenditure of those funds over the next decades. And so this activity, both the three interim reports, as well as the recorded workshops, which are now available on the National Academies website, for those interested, that input informs the working groups, which are already working, I understand, at HHS on this project, and will help them in terms of forming their strategic plan to expand these funds.

Tom Temin: And what are the data infrastructure elements here? I guess it sounds like basically, they need to know what are the sets of data? What are the sources of data they need, such that the research they do can give them the results they’re looking for, give them the answers they’re looking for? I mean, you’re talking about the data itself more than information technology to support it all, correct?

George Isham: Well, it’s complex, because the patient-centered data structures for American health care are fragmented. And the reason that these data structures need coordination, for the purposes not only are research, but then on down the road for patient care. And then, as you indicated in your introduction, ultimately, for appropriate incentives to be applied, is the fact that they’re distributed among the number of federal databases, as well as private databases, both private databases in terms of the health system that you go to your doctor’s office, medical records, as well as hospital structures. So their challenge or problem is to coordinate those structures to make sure they talk to each other. And when you’re doing research to make sure that the information is available to answer the research questions about what best treatments people need, as well as maintaining their health.

Tom Temin: We’re speaking with Dr. George Isham, he’s senior fellow at HealthPartners Institute and a senior advisor for the alliance of community health plans, and also chairing a big National Academies effort on behalf of HHS. And tell us who participates in general in these panels that are recorded and what it is they’re looking for in the data structures.

George Isham: In the panels that are convened by the National Academies, they are looking for a diverse membership of both emerging leaders as well as those experts with decades of experience in broad fields that relate to the charge to the committee. And in this case, that included the fields of patient-centered outcomes research itself, research methods, statistics and demography, computer science and data infrastructures, as well as patient engagement and patient perspectives. And we have 15 members on the committee that sort of represent those different disciplines and perspectives. I as chair, I’m actually not an expert in any of those. I’m more from the health care systems, but experienced in the academy process and so forth. So my challenge is to make sure we’re all on this same page, and we reach appropriate conclusions that are useful for the purpose of the study.

Tom Temin: And this is a challenging field, because in addition to some of the data issues that all domains have, such as the ontology, the naming of things have to match up and so forth so that an equal field in one place means the same thing as the field somewhere else. But also in the health area there’s an enormous and kind of scary privacy regime that just simply must be followed under HIPAA and some other federal laws and regulations so that when you combine data from various sources for research, that is always top most in pretty much everyone’s mind. Fair to say?

George Isham: There are many, many issues and the issues that are related to privacy and so forth will be addressed as we work down the line. That’s certainly one of the issues. This first report really focused on the data needs of patients and providers and the family, rather than some of those other issues. That last report that we have will take on the integration of many of the issues that are related to this. So, afraid I just can’t add any additional information about privacy or security at this point.

Tom Temin: Well, trust me, it’s on its way for the future workshops. But with respect to the eventual formation of some kind of a comprehensive data infrastructure, is it your sense that HHS envisioned this facility to be not just for its own research, but for grantees, and pretty much anyone who has an interest in improving public health and health outcomes of organizations would also be able to use this data infrastructure?

George Isham: Well, let me say this: The intent is not to build a single large database, one of the implications to your questions. But rather to take the health care system as it is and coordinate the information flows, such that it’s available for research. And then obviously not the subject of this report, but if it’s available for research, then it’s available patient care. And those incentives you mentioned in the tee up. So some of that information, given the nature of health and health care is in federal databases. Some of them not in traditional health care databases, like economic data, or social data, which we’re realizing is increasingly relevant to patient-centered outcomes. And then others are in those federal databases – Medicaid data, Medicare data – but quite frankly, many of them are in private databases. So that’s not going to change anytime in the next 10 years I’m sure, but I’m not a seer with respect to health care reform. But the challenge here is to make the linkages clear, and the purpose and the collection of the data available and the access to the data more relevant so that research can be facilitated. And we can get the answers we need with respect to guiding patient choices.

Tom Temin: And ideally, I guess, health organizations like HHS would want to have several ways of looking at a particular issue, for example, from the standpoint of an individual, maybe at some point in the clinical system, or from the standpoint of what does this drug do in various situations? Or what do these economic or social or racial or ethnic factors – how do they play in a situation? In other words, you got to look at it from a bunch of different angles, depending on the requirement, but they all have outcome research at the core.

George Isham: I think that’s right. I think I would say it a little bit differently. But I think that’s right, essentially, Tom. The patient-centered outcomes research focuses on the scientific evidence of prevention and treatment options that inform health care decisions of patients, families, and health care providers. And in order to do that, you have to take into consideration those preferences, values, questions patients face when making health care choice, as well as the social factors that impact persons before their patients. And that’s one of the conclusions we came to in this report is that, because of the, say, food insecurity or housing or educational level or level of health literacy, people – when they’re people before their patients, their health is affected. And you need to understand that in order to be able to respond effectively to them as a provider, or yourself or your family being able to advocate and do what you need in order to stay healthy. So that’s the way I would put it. That’s at the patient-centered outcomes sort of framework.

Tom Temin: Alright, so we can check with you early next year then on how this all concludes?

George Isham: You can check with me as the subsequent interim reports are issued if you wish, Tom. But certainly, early next year, we hope to be finished with the project and have the input HHS so they can use it for their important strategic planning process. I look forward to that, Tom.

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