This is a guest post by SPM member John Sharp, Manager of Research Informatics at the Cleveland Clinic. John gets it about how information empowers healthcare and e-patients. I first met him at Medicine 2.0 in Toronto, 2009, after which he wrote an article for our Journal of Participatory Medicine, which began: “If you have not read the e-Patient White Paper, you don’t understand the future of medicine.”

Strong words, and of course we agree. Here’s his take on an announcement this week that he believes is an important step toward the potential of health IT – the world in which he works; I added a few comments.

“Query Health” may sound like a consumer health information tool, but it’s not. Announced this week (GovHealthIT story) by the Office of the National Coordinator for Health IT (ONC), it’s a new initiative which plans to make clinical information available to researchers nationally, to study population health. The project charter is here.

Query Health is a big step in the promise of health IT: to give us a good picture of how we’re all doing, and understand how to improve, in a fact-based way driven by data. We do have such comprehensive information about seniors, because virtually all their records go through Medicare. This has enabled research on elder conditions (such as prostate cancer and hip replacement) that simply hasn’t been possible for the sub-Medicare population. More on this below, but first, a word about how this fits the big picture of modernizing American medicine.

It’s Similar to HIE

Health Information Exchange (HIE) is a much discussed topic in health IT today. It’s the ability to move your medical records from one place to another, which will enable continuity of care between electronic medical record (EMR) systems. So, if you (or your child) show up in a hospital emergency room where you have not been treated before, your records can be accessed to help the physician know your medical history: allergies, medications, previous problems, health concerns, etc. HIE is obviously good for the patient, but it’s also good for the clinician: how can anyone perform to their best potential if they don’t have important information?

Query Health plans to use similar technology to pull together huge amounts of clinical data from disparate EMRs, to research public health problems, epidemics, efficacy of drug treatments, and monitor health trends. The initiative has several workgroups including: implementation, clinical, business and technical. Already there is broad participation from industry, providers and public health groups. Recently, they hosted a “Summer Concert Series” of presentations to highlight efforts around the country.

Will My Data Be Protected?

The plan is to use a distributed data model. What this means is that the data will not be centralized into one huge data warehouse. Rather, participating institutions will make de-identified data available upon requests by researchers (queries) to the network. The only data shared will be what’s needed for the specific study. In some cases only summarized data (totals etc) from each partner institution will be shared, further protecting individual level data.

What’s in it for e-Patients?

The research that comes out of Query Health will improve the information clinicians and e-patients have available to participate in medical decision making. As with any newly published medical information, in some cases it will surely enable patients to bring new information to their clinicians. This could add value to the care transaction without increasing clinician burden.

For instance, Query Health has significant potential for investigating disease. It can look at large populations and discover small changes, such as drug side effects which may not be discovered by other means for years. Studying disease and practice trends will help providers better understand effective treatments, growth trends in diseases and conditions, and in comparing treatments for a given condition (Comparative Effectiveness Research).

At this point, there does not appear to be a clear role for e-Patients within the Query Health initiative unless one is part of a technical standards group, provider organization or EMR vendor. But it’s an important initiative to keep tabs on, because it promises to deliver real patient-centered benefits – and that’s part of the promise of health IT.

John Sharp, MSSA, PMP, FHIMSS
eHealth blog: http://ehealth.johnwsharp.com
EMR Daily: http://paper.li/tag/EMR
Clinical Research Informatics, Cleveland Clinic, Cleveland, Ohio

The opinions expressed are my own and not those of my employer.