AAOS establishes patient advisory network
Patient stories enhance, support orthopaedic message
By Kathleen Misovic
As an operations consultant, Joe Kilraine, 54, of Bethel, Conn., was accustomed to using his communication skills to work with oil and chemical companies. A fall on a wet floor that resulted in herniated disks in his spine changed his focus to communicating with orthopaedic patients and legislators.
Kilraine is a member of the AAOS Patient Advisory Network, a group of orthopaedic patients working to improve patient-oriented communications, information and advocacy regarding musculoskeletal conditions.
“By pulling patients together, the AAOS is creating an additional arm of power to help it get its message out to the public and the government,” Kilraine said.
The network is still in its infancy regarding some of its objectives and activities, said Christy M.P. Gilmour, AAOS manager of medical research. She is working on a business plan for the network that she expects to complete in May.
However, preparations for the network’s most vital function, participation in Research Capitol Hill Days, are in full swing.
Patients go to Washington
Research Capitol Hill Days is a two-day event held in Washington, D.C., during which the Academy advocates for additional government funding for musculoskeletal research. In the past, it was open only to orthopaedic surgeons and researchers. However, last year the Academy decided to include orthopaedic patients. Fourteen patients of all ages, including a 9-year-old child and several senior citizens, made the trip. Gilmour is expecting the same number of patients to attend Research Capitol Hill Days this year, on March 16 -17.
On the first day, patients receive training through role-play exercises and breakout meetings to prepare them to meet with their legislators. Later in the day orthopaedic surgeons join the sessions for additional breakouts. Plans are also in the works to include a congressional staff member, who can explain to the patients what to expect during the meeting. “It’s a very exciting opportunity for the patients, but it can also be very daunting,” Gilmour said. “So we offer them a lot of support.”
The first day ends with a reception. The next morning the patients and their orthopaedic surgeons have appointments to speak with legislators.
During these appointments the patients are encouraged to voice their support for increases to the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) budget. The patients also tell their personal stories about the effects of musculoskeletal conditions on their lives and how they have benefited from advances in musculoskeletal research.
“Many of the patients bring props, such as their before and after X-rays,” Gilmour said. “We find the legislators are very willing to listen and speak with the patients.”
“I think members of Congress find it easy to relate to a patient,” Kilraine said. “They all have a mother, grandfather or some other relative who suffers from a sore back or some other orthopaedic condition.”
Kilraine slipped and fell on a wet grocery store floor in 2000, leaving him with a fractured patella and herniated disks in his spine. He underwent a successful total knee replacement, but conservative treatment wasn’t sufficient to ease his back pain.
In October 2003, Kilraine underwent a new surgical procedure, artificial disk replacement (ADR). Traditionally, orthopaedic surgeons have performed fusions on the spine to treat herniated discs. ADR uses an artificial disc system to replaced damaged disks.
“I walked the next day after surgery; it was unbelievable,” he said.
Kilraine was so satisfied with the results of the surgery and so happy with the treatment he received from his orthopaedic surgeons, he wanted to ensure that other patients enjoyed the same treatment.
“I got so much benefit from the orthopaedic world that I wanted to give something back,” he said.
Kilraine began working with James Yue, MD, one of his orthopaedic surgeons and a specialist in ADR at Yale New Haven Hospital in Connecticut, on a pro-bono basis as a patient advocate. He speaks with patients who are good candidates for ADR, explaining the procedure and what to expect in the hospital as well as during recovery and rehabilitation. He also gives them tips on how to finance the procedure, which is not yet covered by most medical insurance plans.
“There are a lot of patients who really don’t know where to turn. They hold the medical community in awe and don’t like to ask questions,” he said. “Communicating with me as another patient is very helpful for them.”
He also attended Research Capitol Hill Days last year and plans to attend again this year.
Ideas for the future
When Research Capitol Hills Days 2005 are over, network members don’t intend to rest. They have several ideas they would like to see implemented, such as a patient newsletter to keep them up-to-date on orthopaedic news and issues, and a Web site geared specifically to their needs, Gilmour said. They would also like to schedule large events to network with other orthopaedic patients, she said, adding that all these suggestions are under consideration.
Any members who are interested in learning more about the Patient Advocacy Network and attending Research Capitol Hill Days 2006, perhaps with a patient, should contact Christy M.P. Gilmour at (847) 384-4323 or Gilmour@aaos.org