The frustrating and costly issue of patient adherence has been the subject of more panel discussions than I can count. In the latest variation, TEDMED held a Google Hangout this week examining the Patient Activation Measure as a way to better assess how likely patients were to know about and to confidently take a role in their own care. Although many hospitals use the assessment, 50 percent of patients still fail to take prescribed medications properly.
On the effectiveness front, PAM was inconclusive, it seemed. It’s helpful to give doctors a better understanding of their patients. But it’s only as effective as physicians make it. That was the overriding conclusion. The very limited time physicians have with patients adds a certain level of tension to squeeze what should be a 30 minute or one hour chat into 15 minutes.
Sometimes I think the downside of talks about this issue is that they never seem to include the patients they are trying to reach. Emily Kramer-Golinkoff, a patient with cystic fibrosis and the co-founder of Emily’s Entourage, a nonprofit organization that raises funds and awareness to help find a cure for Cystic Fibrosis, was one of the Great Challenges talk participants. She is young, technology savvy and hyperaware of what other patients need.
But what would be great would be patients, especially on the older side, who can speak about the mundane challenges they have surmounted to improve adherence. Did it come from their interactions with a doctor or caregivers or another source? What has helped them to be a better patient? Heck, have a few people with different conditions and get their perspective on what helped them become better patients.
Much of the problem seems to stem from a need to better educate doctors on how to have frank and constructive conversations with patients having trouble with adherence. They need to strike a balance between getting enough information to help them change behavior or adjust their schedule and not coming across like the Spanish inquisition. And don’t forget they only have 15 minutes or less to do that.
It’s certainly not impossible. Suzanne Mitchell, Assistant Professor of Family Medicine at Boston University School of Medicine and a family physician, emphasized that patients need connection, clarity, confidence and some control.
Chronic pain patient Heather Grace, who writes for the Pain Journal and who posted a note during the conversation, seemed to check all those boxes in her note posted on the website. She also raised an interesting point about making patients feel more like they are on a team in charge of their care as she described her doctor’s approach.
“He’s very direct. His methods seem to work well because they’re practical, especially in today’s fast-paced healthcare arena. On day 1, my dr told me that I was very ill & MY JOB going forward was to stay as healthy as possible–that no one would care as much abt MY HEALTH as I do. He said I had to get in the driver’s seat. Was I intimidated at the outset? Sure! I’d never met a dr like him before!
“I soon learned that his entire practice revolved around patients achieving wellness by getting as involved as possible. He had a simple monthly questionnaire that asked what we were doing to get back to life. Were we… Engaged in physical exercise–even walking/stretching? Exercising our minds through reading, puzzles etc? Eating healthy? Leaving the home more/how often? Socializing? Working/volunteering? Etc… I also got grt educational info that day & I continue to learn ways to improve my health, all the time. Truly, it’s up to me to use the tools provided, to be invested in my health. And if I’m not seeing results, I can now confidently discuss this with my doctor–even bringing suggestions to the table”
Just as doctors say no one teaches them how to effectively engage patients in their healthcare, no one teaches patients how to be optimal patients.
But with hospitals facing greater liability for readmissions and improving patient satisfaction, it is essential for doctors to initiate questions and interactions that give them the information they need to more effectively work with their patients.
There seems to be an overall assumption that patients are willing to be involved. Maybe there is a difference between the US and Europe where we still hear frequently, including in our families, that patients just want to leave their doctors decide and do what is best for them. From this passive position it is even more of a challenge to intervene on non compliant patients.
Many researchers now argue that patient non-adherence is more often the result of ineffective patient communication skills and not “disengaged, lazy or forgetful patients.” One study showed that 19% of patient non-adherence was attributable to poor physician communication with patients.
This is not surprising given that the average primary care physicians spends less than 60 seconds during the average visit (when prescribing a new RX) explaining to the patient why they need the new RX, how to take the new RX, dosage, indications/contra indications, and so on.
Mind the Gap
"Just as doctors say no one teaches them how to effectively engage patients in their healthcare, no one teaches patients how to be optimal patients."
Great post on the challenges of achieving patient activation, and this quote captures it perfectly. What if there were a strategy to address both of these teaching gaps at once?
Patients who learn the Right Question-Effective Patient Strategy ask questions, share in decision-making, and are more engaged in their health. Providers who learn to teach the strategy start their visits by asking "what questions do you have..." and spend more time discussing topics that are of concern to their patients.
Stephanie: Great article. Adherence and patient engagement is an extremely difficult problem to solve, and you are right on the money when you say that the limited amount of time doctors get to spend with their patients is a leading culprit. Couple this with the unique challenges each patient faces in their lived experience (related to the WHO's five dimensions of adherence), and it is a highly nuanced issue.
I think you would be fascinated by the work that Dovetail Health is doing (they are at www.DovetailHealth.com) to address this challenge, especially for complex care and very ill patients. Check them out.