Creation of Patient Registry Meets Industry’s Need

Erin Thomson
Erin Thomson

The O&P industry has been admittedly slow in gathering and examining patient data and outcomes. In response, Thomas Jefferson University’s School of Population Health and the American Orthotic and Prosthetic Association (AOPA) have partnered to create a patient registry project pilot, according to Erin Thomson, project manager at Jefferson. The pilot test will develop the framework for a patient registry and address the growing need for research data in the O&P field.

Lack of data

According to Thomson, there is a lack of data gathered for statistics that include comparative effects between devices, economic analysis and consumer feedback. This lack of data has the potential to negatively effect how O&P providers are reimbursed.

“We are seeking to develop a framework for conducting outcomes research in the O&P population and in order to fulfill that goal we are attempting to create a patient registry and to pilot test the current data collection strategies that are being conducted,” Thomson said.

Before the pilot began, Thomson and her colleagues conducted a literature review of the past 9 years regarding prosthetic and orthotic outcomes. They were also interested in the data collection elements used by investigators in the literature. Her colleagues conducted research to gauge whether there was a validated and reliable instrument currently available and in use. Thomson and her colleagues were interested in these instruments in order to develop the instruments used for the patient registry pilot.

The as-yet-to-be-completed pilot, created in March 2009, will ask patients to fill out a survey at the practitioner’s office. The survey, which has been implemented in nine clinics across the country at press time, will gather information regarding prosthetic outcomes, orthotic outcomes and will help determine which data collection methods are best suited for the O&P field. The patient registry project pilot underscores the need for credible data collection methods. Improved data collection methods, such as reliable self-report instruments, will increase patient outcomes data, which will inevitably help future O&P patients and practitioners.

The provider will also fill out a survey geared towards a patient’s level of compliance, their level of improvement with the device, their overall level of health after being issued the device, level of function and their level of functional improvement after being issued the device.

“The patient registry will demonstrate the value of orthotic and prosthetic devices and provide current evidence to both insurers and policy makers,” Thomson said during her presentation.

Future impact

Creation of Patient Registry Meets Industry’s Need
© 2010 iStockphoto

Thomson and her colleagues continue to modify the survey in order to make it easier for the patient to use. The project is being called a pilot test because Thomson and her colleagues are still researching the feasibility of collecting data in a clinical setting. Their goal is to design a brief general satisfaction survey as well as gather demographic information of O&P patients.

One of the challenges facing the team is how to make the survey less of a burden on the patient. The survey includes 26 questions that take an average of 15 minutes to complete. The length of time and the amount of questions in the survey are critical to the pilot’s success. While the patient registry is not a longitudinal study, patients may feel as though they do not have the time to take the survey — a feeling Thomson hopes to alleviate by making some changes. She must accomplish this while still gathering the pertinent patient information for the registry. The registry has a sample size of 19 patients. Thomson is aiming for a patient total closer to 100.

“What we are trying to do is collect data from patients from around the country versus an institution or a company so we can get broader ideas and improve quality of life,” Brian Gustin, AOPA immediate past president said at the AOPA National Assembly.

Once the practicality of the project pilot is reached and more feedback is obtained, Thomson and her colleagues will modify the survey. The survey is expected to go through many modifications during the pilot run.

“I would like to impress upon the O&P practitioners that this is their opportunity to directly impact the future of what O&P services are provided for patients,” Gustin said. “It is the registry of patients which researchers will draw from for sample distributions. Obviously, the larger the population, the better the sampling and more accurate statistical outcomes will be as a result. Payers are increasingly looking for this justification information before they are willing to pay for services.”

Thomson and Gustin both believe the patient registry is crucial to the future of O&P.

“There is a lot of work that needs to be done, but this is a valuable initiative that I hope will advance,” Thomson said. — by Anthony Calabro


I think this is a worthwhile initiative, very appropriately being spearheaded by AOPA, that is in many ways the logical extension of their historic collaboration with the Committee on Prosthetic Education and Information to conduct the first ever census of prosthetic patients back in 1961, published in Artificial Limbs by Harold W. Glattley in 1963.

One primary limitation of all such surveys is that they are not a random sample because the participants are being recruited only from those patients who find their way into an established facility. It will therefore have some obvious limitations, so there will continue to be a pressing need for other surveys and for research using different sampling methods.

But for certain purposes, this approach should work well … it should provide a lot more information about the inevitable challenges so this can be developed into an effective, ongoing endeavor. I believe this is an important contribution because the more information available; the more data available; the more evidence developed: the more effectively we can treat our patients.

—John W. Michael, MEd, CPO, FISPO, FAAOP
President, CPO Services Inc. and O&P Business News Practitioner Advisory Council member.

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