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Bringing Patients' Voices Into Parkinson's Research

Despite all the good work that's being done in Parkinson's disease research, there’s one factor that Bill Brawley said often seems to be missing -- the patient.

“Patients need to realize that doctors are people too, and to some extent, vice versa,” said Brawley, 48, recently at his home in Etna. “Day to day, it's easy to lose sight of what you're working towards.”

Not that Brawley is throwing stones. He's been the beneficiary of the advances in treatments for Parkinson's, a neurological disorder for which there still is no cure. He was diagnosed with the disease more than a decade ago. Thanks to groundbreaking work in deep brain stimulation treatment, he lives a life of relative independence that many people with the condition do not enjoy.

However, it is his hope that as physicians search for a cure, patients can play a role.

Brawley recently joined a national advocacy effort to give patients more prominence in the research and development of new treatments.

Brawley is among 130 people with Parkinson's who are working with research groups, government agencies and private industry to bring a patient's voice into Parkinson’s research. Organized by the Parkinson's Disease Foundation, a New York research and advocacy organization, the Parkinson’s Advocates in Research initiative is aimed at helping improve treatments by raising awareness of issues that researchers might overlook, according to the organization.

“Our philosophy at the Parkinson's Disease Foundation is that people with Parkinson's are the ultimate consumers of those therapies,” said Ronnie Todaro, director of national programs. “As the ultimate consumers, they need to be engaged with all aspects of the research process.”

There has been a shift in recent years in common perceptions of the doctor-patient relationship, Brawley said. The paternalistic notion of a doctor instructing a patient about what treatment he or she would receive -- without any discussion or feedback from the patient -- has yielded to one of shared decision-making, where physicians and patients discuss the available options and determine what is best.

The evolving doctor-patient relationship is reflected in initiatives like the one Brawley has joined, as well as at institutions such as Dartmouth-Hitchcock's Center for Shared Decision Making, which works with patients to fill in the “knowledge gaps” and figure out, based on their lifestyle and priorities, what treatments would best suit them, said Susan Berg, the center's interim program director.

“It's looked at as the clinician is the expert on the conditions and determining care, and the patient is the expert on how the potential benefits and harm will affect their daily lives,” Berg said.

There is recognition among health professionals about the complex life factors that affect care, Berg said. Doctors and patients have to consider not only what treatments are available, but also how they will affect the patient financially and emotionally, Berg said.

While the center is focused on decisions about treatment, the Parkinson's advocacy initiative presumes that patients have a big role to play in research as well.

“With all the talk of ‘patient-centered' medicine, there's no obvious place for the patient to plug in,” Brawley said.

Brawly has contacted researchers at D-H to find out how people with Parkinson's can play a larger role in advancing care. Much of his effort will be to raise awareness among patients themselves.

Brawley has been meeting with support groups around the region to talk about the latest research and clinical trials in which Parkinson's patients might participate. In some cases, the demands on a patient are quite small, requiring little more than a handwriting sample. And yet it can be a struggle to get participants because people aren't aware of the studies, he said.

Beyond offering a sympathetic ear for Parkinson's patients, support groups are key networks for dispensing information that patients don't often get from doctors, Brawley said. Time constraints during doctor visits don't allow much discussion on important topics, such as journal articles or addressing specific lifestyle concerns.

“There's only so much you can do in a half-hour doctor visit every six months,” Brawley said. “And not getting the kind of insights about improving quality of life can really matter.”

Meeting with support groups is something Brawley would be doing anyway, he said. His involvement with the advocacy network broadens his efforts to focus on medical professionals. Brawley has just started placing calls to Dartmouth researchers to find out where patients might get involved in their work.

He wants to reintroduce researchers to the people they are studying. Everyone has the same goal -- to find a cure for Parkinson's. Sometimes, it helps to remind people of that.

“It raises the profile of Parkinson's,” Brawley said. “It raises the awareness of it in the community of people that are doing the research.”

Note from PDF:

Bill Brawley, mentioned in the news story above, is one of 130 PDF Research Advocates who are part of Parkinson's Advocates in Research. He and his fellow Research Advocates are working around the United States to influence research and speed new treatments for Parkinson's.

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Source Date: Jan 30 2012
Source Publication: Valley News | By Chris Fleisher
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