The profile of patient advocates has been building steadily, but they’re also facing some interesting questions about their identity as they figure out how to maximize their effectiveness. In a Patients Town Hall to recap some of the highlights of the ENGAGE conference this week, panelists talked about what they need to make patients more like partners with providers. You can check out the video here.
Here were the most interesting points to come out of it.
#mcENGAGE my challenge with the “we’re all patients” vs “no we aren’t” is it implies levels of worthiness; It’s divisive. @kymlmartin
— Nick Dawson (@nickdawson) October 1, 2014
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Who is a patient? Throughout the conference, one of the ongoing themes was how people think of themselves. “Consumer” was used as a way to drive home the idea that health plans are packaging themselves to be more consumer friendly to be more competitive with each other. Some aspects of healthcare are following suit. But “patient” pretty much dominated. At least one panelist suggested that certain people are entitled to use that term to describe themselves. People with chronic conditions? Advocates? I wonder if they think the term gets watered down and meaningless the more it’s used. But as Nick Dawson points out, it seems needlessly derisive. What next — a patient hierarchy?
Balance between confrontation, sympathy and partnership Joy Pritts, formerly of the ONC, and Suzanne Mintz, who founded the Family Caregiver Advocacy, made some excellent points. highlighting some vivid examples of what happens when doctors don’t listen to patients and how that can be changed. For Pritts, during a stay in the hospital she was overprescribed magnesium sulfate and went into pulmonary edema. She complained she was seeing double and the doctor told her that was impossible because it wasn’t in his medical book. Thankfully, another doctor came along and corrected the error. Pritts used the experience as an opportunity to emphasize the need for greater empathy and compassion on both sides. “Doctors are varied…Patients don’t see doctors very often, but doctors are so busy that patients feel like they are being treated as an afterthought.”
Mintz pointed out that it’s critical for patients to do what they can to prepare for appointments, and particularly caregivers. “We write up questions in a notebook, we prepare. We as patients and caregivers have to accept responsibility between us and the healthcare system and it is important to stand up if you think something has gone awry.”
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The rise of the family caregiver There’s a growing awareness of what a family caregiver is. Mintz talked about the need to move the family caregiver from a voice to a role. She also referenced an article she wrote on the subject:
“Given the work that we do from complex medication management to care coordination, from serving as visit companions at medical appointments to giving injections, doing catheterization and wound care it is essential that we be identified as care team members and information about our involvement documented.
Perception is reality Although the Patients Town Hall was positioned at the end of the conference to give participants the benefit of commenting on what transpired over the past two days of ENGAGE, the panelists each interpreted it as one big diss. Given the subject of the conference, panelists all believed the town hall should have kicked off the conference, not bookended it. It didn’t seem to matter that members of the panel had been on stage over the past couple of days
One panelist expressed concern that the bad experiences that reporters like me tend to highlight will amplify the perception that the struggle between providers and patients will degrade into an us vs them issue. Hopefully the positive interactions won’t get lost and will be shared more often.
Need for greater activism by patients Pritts added that from a policy level, the patient’s voice is often missing. If you don’t file a comment, no one hears you. With policy changes, you always have companies that stand to benefit from the outcome.
