Healthcare Insider Blog

How can disease registries help improve our model of patient-centered care?

  • Healthcare Alvernia

In the healthcare realm, the comprehensive collection of patient data — such as information on patients’ diagnoses, care, and outcomes — through registries is crucial for research. It allows DNPs and other healthcare professionals across the board to compare and analyze data and ultimately improve population health management and interventions.

Robert Wood Johnson Foundation (RWJF) recently published an article focusing on a disease registry in Sweden that proves to be much more than a data storage house.

The Swedish Rheumatology Quality Registry (SRQ) focuses on the patient and provider working together to reach the highest quality care possible. Designed to prepare the patient for their doctor visits as well as to engage them in their own care, each patient can log on remotely from his or her laptop, tablet or mobile device to record their symptoms, track their progress and challenges, and review doctors’ notes and test results.

“From a quality perspective, the implications are exciting. Engaging patients to track their symptoms and quality of life outside the doctor’s office and participating more actively in their care led to substantially better health outcomes,” the RWJF article explains.

It also benefits large-scale public health by recording all the data entered in by patients, stripping it of patient identifiers and exporting it to the national SRQ directory, helping physicians benchmark the quality of their care.

So far the SRQ has helped to reduce inflammations and the number of total hip replacements by 90 percent in patients with rheumatoid arthritis.

The SRQ has inspired the development of several other disease-specific data registries here in the U.S. focused on improving patient care and their overall experience during doctor’s visits.

One of these is a model called IBD Qorus. Developed by the Crohn’s & Colitis Foundation of America with advisement from Dartmouth Institute for Health Policy and Clinical Practice, the model features a series of questions for patients to answer before their appointment to ensure each visit focuses on what is most important to the patient at that moment in time.

One of these questions, they discovered, could alter the focus of a doctor’s visit completely: What is the single most important thing you want to talk about during your visit?

They found that many times the patient is less concerned with talking about their disease and is more concerned with discussing how their disease affects their quality of life.

In the article Corey Siegel, M.D., a doctor and professor at Dartmouth, tells the story of one patient with Crohn’s who, when asked what she most wanted to focus on during her visit, wanted to discuss what obstacles the disease would present to her and her fiancé (who also had Crohn’s) as parents taking care of their future children.

“It ended up being a very powerful and emotional visit,” Siegel told RWJF. “We were able to talk her through her concerns and how parents with Crohn’s care for children.”

The data registry allowed for the provider to think beyond the patient’s disease and focus on how it was affecting that person’s quality of life.

Alvernia DNP students will take courses like NUR 703: Using Informatics for Quality Improvement, which focuses on the integration of informatics to support evidence-based practice in the primary care setting. Students will learn how data capture, analysis and application can be used for healthcare quality management and performance improvement.

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