Patient advocate: caregiver's viewpoint as critical as the doctor's
When it comes to managing chronic conditions, healthcare providers are often missing incisive input from two very important sources — the patient and caregiver.
“It’s interesting what perspective we’ve gained — it is realizing that patients and caregivers are the true experts in managing chronic conditions,” said Kristina Sheridan, who left her engineering job in the aeronautics industry to become a healthcare advisor and today is a department head for McLean, Va.-based MITRE Corp. “My 12-year-old daughter Kate (now 21) was the only one who could explain what she was going through.”
When Kate was 12, in fact, the situation became complicated such that even repeated visits to doctors did not get them any closer to finding the root cause of what was bothering her.
“Then on one occasion the doctor thought he knew what was going on and asked her if she was having a particular symptom. She was, but she didn’t previously know that communicating it was important,” Sheridan said. “That established a breakthrough — she had the whole picture all along and that was a game-changer for us.”
But it took three years and 15 distinct diagnoses to determine she had Lyme disease that had triggered comorbidities and affected her immune system to the point her body was not responding to antibiotics.
The issue, Sheridan said, was that the healthcare establishment approached the situation from a clinical perspective and not from the patient and caregiver’s viewpoint.
“By pulling together all the data from her spreadsheet and taking a holistic view, we were able to ascertain the crux of the problem,” Sheridan said.
Once a bona fide treatment regimen was established, Kate regained her health and is now planning to study at Oxford University.
In “Lessons from an Empowered Patient and Their Caregiver” on Thursday, Feb. 23, at 10:30 a.m. in Hall F3 of the Orange County Convention Center, Sheridan will relate the difficulties she experienced in dealing with her daughter Kate’s suffering over a 10-year period and how her revelations can help further health IT’s role in disease management.
HIMSS17 runs from Feb. 19-23, 2017 at the Orange County Convention Center.
This article is part of our ongoing coverage of HIMSS17. Visit Destination HIMSS17 for previews, reporting live from the show floor and after the conference.