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This is why clinicians need to partner with patients instead of seeing them as subjects

The desire by patients to take control of their data combined with the growth of personalized medicine raises an interesting question? What’s the best way for doctors to give patients genetic test results? Readmission is also a vexing issue, particularly for COPD. What kind of insights could patients offer doctors to change how they provide […]

The desire by patients to take control of their data combined with the growth of personalized medicine raises an interesting question? What’s the best way for doctors to give patients genetic test results? Readmission is also a vexing issue, particularly for COPD. What kind of insights could patients offer doctors to change how they provide follow-up care?

Those issues are at the heart of two Patient Centered Outcomes Research Institute grant-funded projects at Geisinger Health System and Johns Hopkins University Schools of Medicine. A panel at ENGAGE offered a glimpse of some ways in which clinicians can work with patients to make some headway on some of these complex medical dilemmas.

PCORI started in December 2012 and to date it’s allocated $671 million to 360 projects.

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Geisinger’s project involves developing a way for sharing genetic lab results with patients. It’s in the first year of a three-year project. Michele Bonhag, a patient investigator, developed questions for the team of researchers to pose to patients. Marc Williams, the deputy director of the Genomic Institute at Geisinger, said the project has had a transformational effect on how it sees patients. “We redid our strategic plan so each proposal has to state a patient engagement plan. We have moved from seeing patients as subjects to seeing patients as partners.”

Bonhag, who also serves as the patient representative member of the Oversight Board for the Whole Genome Sequencing Program at Geisinger, added, “I am giving a voice to patients who have not had a voice in this industry.”

The project has also called attention to the complexities of developing a care plan for patients with rare conditions when the reality is few non-genetic clinicians will know much more than the patients who live with these diseases, said Williams.

Dr. Hanan Aboumatar, an assistant professor at Johns Hopkins Schools of Medicine and Public Health, is the principal investigator for a study evaluating strategies for following up with COPD patients after they’re discharged to reduce the need for readmission. Edna Shattuck, a PCORI Breathe study co-investigator and patient representative, has served as an intermediary between a group of clinicians and a group of COPD patients and their caregivers. Shattuck said initially when

she sat down with the group she was intimidated but that eventually wore off. I remember the first time I disagreed with something and said, “No,” and there was silence because they didn’t understand. When people come to the hospital a COPD nurse is there to help them focus on what they need but when they leave the hospital they need help to build their skills and explore the barriers they face every day.

Although medication adherence is a frequent area of concern by physicians, the details of what is driving it are frequently lost. “Some COPD patients may not know how to use a nebulizer. But if you are a patient with arthritis it can be tough to use  We created a structure that allows us to engage as much as we can,” said Shattuck

One of the goals of the Johns Hopkins program was to create a better buddy system between COPD patients and their family caregivers so each had all the information they needed to manage their health well  –it was a stakeholder engagement plan

“Wen we talked with Edna it opened our eyes. Patients are bombarded with information — there are so many different types of inhalers and oxygen inhalers, there is somehow the assumption that patients will be able to see the differences,” said Aboumatar.