Although the concept of clinical registries isn’t new, registries are emerging throughout medicine and with increasing frequency. Their intended uses span quality improvement, public health monitoring, clinical and health services research, and postmarket surveillance. Considering the current political and professional environment, this rapid growth of registries is somewhat predictable. Physicians are practicing in a time of ever-increasing focus on quality measurement and improvement in healthcare (perhaps most obviously illustrated by the recent nomination of Donald Berwick, MD, [quoted above] as the CMS administrator); dramatic expansion of health information technology (HIT), in terms of capabilities and penetration throughout clinical care settings; and recognition that many clinical questions aren’t well addressed through the current clinical trials infrastructure (e.g., the comparative effectiveness of interventions). All of these factors push registry development.
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Explore This IssueJune 2010
Recently, the medical profession has embraced the concept of evidence-based medicine as central to high-quality healthcare. Evidence-based care is informed by findings of rigorous clinical research and then applied “at the bedside” with skillful interpretation that takes into account numerous treatment options as well as the individual patient’s health, social context, and preferences. This individualized, real-world care is influenced by the expertise of the physician and the local system in which he or she practices.
As such, descriptions of national trends or the results of interventions administered in the controlled research setting do not necessarily translate perfectly to your own practice. It’s unlikely that these findings provide a meaningful roadmap for your practice improvement efforts. This fundamental fact is one of the driving forces of improvement-focused registries. Being a better doctor, providing the best care, and contributing to a fiscally healthy practice require continuing education, ongoing data collection, and a culture focused on improvement.
The ACR has been firmly committed to the concepts of quality care delivery and continuous quality improvement through programs such as our practice guidelines and practice improvement modules (PIMs), along with our overall focus on education and training. Since 2004, the ACR has been closely evaluating the continued maturation of the “quality field” and the movement by employers, private payers, and the Centers for Medicare and Medicaid Services (CMS) to require healthcare professionals to document that they meet quality standards and demonstrate quality improvement. With the passage of healthcare reform, the need to document these efforts will accelerate.
To that end, I feel it is important that our members know fully about ACR efforts in assisting our members in meeting these new professional expectations. Earlier this year, the ACR hired Kristen McNiff, MPH, as vice president of the new Registry, Quality, and Healthcare Informatics Department. She brings a decade of experience in this arena, having been a major force in the quality efforts of the American Society of Clinical Oncology (ASCO) and the development of its successful registry. In this month’s “President’s Perspective,” I asked Kristen to provide her thoughts and vision on the ACR’s present and future efforts regarding our registry development. I think you will be impressed with the efforts to date and the future plans to ensure that our members have the proper tools to function in a changing healthcare environment.
—Stanley B. Cohen, MD
Well-developed registries have the potential to assess healthcare quality and inform practice innovations. Beyond internal applications, such as population management, registries with a collaborative, quality-improvement component can provide provider- or practice-specific and comparative benchmarking data. This audit–feedback aspect of quality improvement—including analysis and reporting of specific quality measures—has been the main impetus for many medical societies’ registry development.
Indeed, many of our sister medical societies have been active in this area over the past decade (or, in some cases, considerably longer), establishing and running registries that enable their members to realize various benefits. The Society for Thoracic Surgery, American College of Cardiology (ACC), American College of Surgeons, and ASCO among others, all maintain registries. Perhaps more relevant to rheumatology, the American Academy of Orthopedic Surgeons recently announced the launch of the American Joint Replacement Registry, with plans to start accepting data in fall 2010.
The ACR’s Approach
The ACR has taken a thoughtful approach to entering the registry arena; we’ve been neither an innovator nor an early adopter. After taking the time to learn from the successes and failures of our sister societies, the ACR launched the Rheumatology Clinical Registry (RCR) in July 2009. This was a major step for the ACR, and an important addition to the member benefits.
Although the ACR’s registry infrastructure is still in development, the RCR served as an effective mechanism for reporting to the CMS Physician Quality Reporting Initiative (PQRI) immediately upon launch. In 2009, 240 members used the RCR for PQRI reporting. The RCR process is more efficient than CMS’ alternate claims-based reporting methodology, and offers the benefit of immediate performance reporting.
Simply submitting codes on claims, or entering data into the RCR as a purely administrative exercise, does not form the basis of practice quality improvement. Some argue that PQRI barely qualifies as a quality exercise, and certainly the program provides limited data points for most specialists. Even with these limitations, however, some members using the RCR for PQRI reporting have identified areas in need of improvement. As we continue to develop the RCR—including the data elements, data sources, and measures reported—we do so with the vision of a comprehensive resource to inform practice innovation.
The field of rheumatology can benefit collectively as the RCR expands. Imagine, for instance, ACR Annual Scientific Meeting sessions that showcase real-world data regarding concordance with ACR guideline recommendations, among other metrics of the quality of care. Imagine reports from targeted practice improvement projects, with results and tools that can be implemented in clinical settings nationwide. The recent annual meeting of our colleagues at the ACC was peppered with these types of sessions featuring results of ACC registry efforts.
As the ACR’s initiatives evolve, there are places where we can play a leadership role. One area is linking practices’ electronic health records (EHRs) to the RCR. EHR data transmission to registries has not yet become a reality for most specialties. Due largely to the recent work of the ACR Health Information Technology (HIT) Subcommittee, the ACR is well positioned to test the first of these linkages in a meaningful and cost-effective way in the 2011 fiscal year.
Finally, continued commitment to and uptake of the RCR will help position the ACR as the leader in defining high-quality rheumatology care. These efforts will prove to payers that the profession is engaging in meaningful self-assessment improvement. They will help the ACR demonstrate that new administrative hassles and externally developed reporting programs are inefficient and unnecessary.
It feels good to be a good doctor and better to be a better doctor.1
Donald Berwick, MD
The ACR’s Infrastructure
To ensure adequate leadership of these expanding initiatives, the ACR Board of Directors recently convened a new standing committee, the Committee on Registries and Health Information Technology (RHIT). RHIT will assume responsibility for the efforts of the Registry Task Force and the HIT Subcommittee, working in careful collaboration with the Committee on Quality of Care (QOC) and other standing committees.
The ACR also has invested in staff to support these efforts. I was honored to join the ACR early this year to lead the new Registry, Quality, and Healthcare Informatics Department. Itara Barnes, who has been working for the ACR since 2007 in the Socioeconomic Affairs Department, moved to the new department to focus full time on HIT and the RCR. Amy Miller and Regina Parker round out the Registry, Quality, and Healthcare Informatics Department, focusing on the tightly interrelated work of the QOC, including guideline, criteria, and quality measures development.
Finally, the ACR leadership and staff are exploring grant funding to support and expand the RCR, especially related to use for observational research. The RCR could provide ACR members in diverse practice settings the ability to contribute real-world data to help answer tough clinical questions and test clinically meaningful research hypotheses. The RCR also could be virtually linked to other existing registries in the U.S., as was proposed in the ACR’s recently submitted grant application to the Agency on Healthcare Research and Quality (AHRQ).
Send Us a Letter!
CONTACT US AT:
David Pisetsky, MD, PhD, physician editor
E-mail: [email protected]
Dawn Antoline, editor
E-mail: [email protected]
Phone: (201) 748-7757
The Rheumatologist welcomes letters to the editor. Letters should be 500 words or less, and may be edited for length and style. Include your name, title, and organization, as well as a daytime phone number.
How Can I Participate?
Check out the RCR at www.rheumatology.org/rcr. You might be surprised at how useful the RCR could be to you and your practice. For instance, the RCR will soon launch a patient portal for collecting new and follow-up patient questionnaire data. Consider the many—and expanding—benefits of RCR participation as you weigh the resources required to participate. You will have access to structured data from your practice to use for population management activities, as well as quality measure reports for self-assessment, benchmarking, and continuous improvement. If you choose, the same data submission can be used to report for PQRI. The RCR also serves as a data source for AIM: RA and AIM: Gout, the ACR practice-improvement modules approved by the American Board of Internal Medicine for 20 maintenance-of-certification points.
Participate in the RCR. Registration is streamlined and easy, allowing you to move quickly into data entry. There is no charge to register or participate in the RCR. If you have an EHR, let us know if you are interested in connecting to the RCR electronically.
Propose future enhancements to or uses of the RCR, including disease modules, data-driven improvement projects, or research topics.
I look forward to working with ACR leadership and committee members, as well as to the active engagement of the ACR membership, as we continue to develop our registry initiatives. Please submit questions or comments related to the RCR to [email protected] ogy.org.
Kristen McNiff is vice president of Registry, Quality, and Healthcare Informatics at the ACR.