Some Boothbay region residents are taking healthcare into their own hands. They haven’t given up on doctors or hospitals, but they have given up being passive consumers of healthcare.

Inspired by E-patient Dave deBronkart’s presentation last July, the Empowered Patients group formed last September, under the auspices of the Boothbay Region Health and Wellness Foundation and the guidance of Dr. Steve Cook.

Through the fall, group members learned how to gather and organize their personal health records so the information would be available when needed. Equally important, they learned to keep their own diary of their physical conditions and to become more active in both diagnosing and managing health conditions.

Ted Schmidt said he began accumulating his medical records around the age of 69. He said his records have been “fabulous to have” and now anytime he goes to the hospital or doctor he is clear.

“I take the position from the moment I arrive: I want my records,” Schmidt said. He said having an organized record of test results, hospital stays and medications can provide a wealth of information to caregivers immediately.

“One of the things Steve (Dr. Cook) did was teach how to organize them logically and particularly in a way that would be useful to a doctor,” Jerry Homer said.

Betty Jean Dobson, peering over a well-organized loose leaf binder, points to a section of documents about an inch thick, all related to one emergency visit. Dobson said she learned from Dr. Cook what records to include, how to organize them and what documents were critical to take when traveling.

Dobson said she picked up another important habit from Dr. Cook: keeping a diary of health events for diagnostic purposes. Dobson said she has had dizzy spells. While in the past she might have told her doctor about having them in an office visit, now she is much more precise.

“If today, I had a dizzy spell, I would note when it happened, what else was happening, what I had eaten, what my blood pressure was,” Dobson said.

Group members all stressed that records not only should be organized together, but that they must be available to emergency responders and to a personal advocate, in case an individual is incapacitated.

“Somebody has to be there to be a spokesperson when a patient can’t speak for themselves,” Cook said. “It’s not just about having your records; it’s about having a plan.”

Patty Seybold said when June Phillips was rushed to the hospital this winter, Seybold found herself unable to advocate for June.

“I was the only one there and didn’t have anything. I couldn’t find her medical records. I didn’t have power of attorney. I had nothing to say I could be her advocate and so couldn’t get information from her primary care physician,” Seybold said. “I felt completely powerless and helpless.”

Conquering “powerless and helpless” in the face of a health crisis or a medical institution’s inertia is the group’s unspoken mantra. In addition to the sessions on health records, the group schedules regular learning events, such as the online medical research program with Boothbay Harbor Memorial Library Executive Director Tim McFadden.

On Monday, April 13, fifteen empowered patients convened at the library to discuss preparing for and managing hospital and nursing home stays. During that meeting, members shared their personal stories, as well as a detailed “project management guide” for patients, compiled by Seybold.

Empowered patients are making health and managing healthcare their own primary concern and they invite others to join them.

For those who might not be able to attend group meetings, the Boothbay Region Health and Wellness Foundation has compiled a patients’ resource library on its website. The resource library is also available at the Boothbay Harbor Memorial Library.