Bringing Evidence into Practice, In a Big Way (Part 4)

Registries are large scale tools for tracking clinical outcomes. In this fourth installment, I wanted to discuss how the data analytics discussed in part three are being tracked and aggregated in order to better examine and hopefully find correlational as well as causal inferences in various types of practice.

I've long been a big fan of evidence-based medicine and evidence-based practice. In my book on the subject (with Randy Hayes) I noted that having an evidence-base is predicated on having a robust literature from which to base reviews and consensus guidelines. However, one of the problems I highlighted is that generally only studies with positive findings are what passes peer review muster. And in my work today, I have also noticed that exclusion criteria—while reasonable for peer reviewed studies—makes many real-world generalizations of what one sees in practice difficult to impossible. Thus, what should be helpful and guiding often are of little practical value.

Registries to the Rescue

An approach that may help with these noted concerns is the increasing use of patient and outcome registries. Numerous healthcare and medical associations have taken leading roles in developing outcomes registries, including the Society of Thoracic Surgeons and the American Association of Orthopaedic Surgeons and the American Physical Therapy Association Outcomes Registry. Collaborations between registries allows for more vigorous benchmarking opportunities. Some outcomes-based scientific literature is often contradictory or employs a great number of exclusionary criteria for scientific reasons that limit the generalizability to heterogeneous outpatient clinic populations, thus significant gaps in knowledge remain. The Registry we've developed is not restricted with such methodological limitations, for example.

The Effective Health Care Program of the Agency for Healthcare Research and Quality conducts and supports research focused on the outcomes, comparative clinical effectiveness and healthcare services. Effective Health Care Program Outcome Sciences, Inc. and the Duke Evidence-based Practice Center collaborated in a study of registries. In their research, they noted:

Patient registries are organized systems that collect data for scientific, clinical, or policy purposes. Registries are a valuable complement to randomized controlled trials in determining real-world outcomes in the practice of medicine. They do not generally have restrictive inclusion or exclusion criteria, nor do they specify what therapy the health care provider must adhere to. They can be used to evaluate outcomes for diverse purposes ranging from the natural history of a disease, to the safety of drugs or devices, to the real-world effectiveness of therapies.

The Agency for Healthcare Research and Quality (AHRQ) is focused on evidence-based approaches to medicine and healthcare in order to improve safety, quality, accessibility, equity, and affordability. AHRQ works within the U.S. Department of Health and Human Services and they have created what’s called the Registry of Patient Registries (RoPR) system to complement listings in ClinicalTrials.gov (part of US National Institutes of Health) by providing additional registry-specific data elements.

We were contacted by the Center for Disease Control and Prevention when they were starting their data clearinghouse on workers’ compensation injury treatment. They now have a very well developed set of resources available through the National Institute for Occupational Safety and Health. Medicare is even getting on the registry bandwagon as they are hinting that they will be moving to registry-based reporting in the future (thus no longer doing claims-based reporting) for Physician Quality Reporting System (PQRS).

An additional benefit of registries is the opportunity for collaborative sharing of non-Protected Health Information (PHI) to be shared between research institutions and governmental agencies, along with universities and medical schools. Indeed, within the first two months of our registry coming online, we've had 4 requests for data from our over 800 data points. An interesting aspect in two of the requesting parties is both studies want to evaluate cost-saving approaches with comparative therapeutic interventions in an innovative medical economic approach of data combinations.

Outcomes and Registries

A very cool opportunity with one’s own registry development is being able to have tools that will allow for near immediate reporting and tracking, and offer a level of sophistication equal to the complexity of the data that is being tracking. For example, there is opportunity to develop customizable reports that can gauge clinician performance based on customizable risk-adjusted patient aspects (e.g., body mass index, age, comorbidity, etc.). Thus, utilization (amount of functional status change per visit) can be risk-adjusted, ultimately developing optimal numbers of visits per identified patient type.

Practices could also parse data by comparative outcomes based on diagnosis, then starting functional range (e.g., pre-treatment baseline on a clinical tool), then patient age group. The result can then compared or “benchmarked” against a matched patient cohort group by provider (clinician level), by facility (clinic level), by network (region level), and nationally. One could also conceivably calculate “average change/visit” as well.

Clinical Staff Management, Productivity, and Quality

While an initial driver of our registry was clinical outcomes, such data also easily and naturally lend themselves to other areas of quality improvement, such as clinical operations and management, empirical quality improvement studies, human resources factors, and more. While this is obviously a helpful tool in current payer-models and situations, such analytic ability becomes even more important when considering and competing for Accountable Care Organization contracts and/or capitated payment arrangements.

All analytics should be able to trigger actions—in the form of processes, alerts, notifications, or recommendations—that can positively impact (or protect) a practice’s or hospital’s clinical and financial outcomes. This will not only improve operational performance, patient outcomes, and competitive standing, but also further support innovation in your respective field of specialty.

Do you have or have you used a registry? What’s your experience been like?

Next up in part 5, back to the future.

# # #

If you'd like to learn more or connect, please do at https://DrChrisStout.com. You can follow me on LinkedIn, or find my Tweets as well.

If you liked this article, you may also like:

Big Idea 2015: Next Year's Medical Innovation Is Already Here

Can Big Data Make Medicine Better? (Part 3)

Building Better Healthcare (Part 2)

Is Technology the Cure for Medicine’s Ills? (Part 1)

Access to Healthcare is a US Problem, Too

I’ll See It When I Believe It