by Carolyn Thomas ♥ @HeartSisters
It’s a stressful time to be a patient these days, what with expectations running high that we should be both empowered and engaged while self-tracking every trackable health indicator possible – and of course retaining an all-important positive mental attitude – in order to change health care forever.
Whew. I had to go have a wee lie-down just thinking about how big that responsibility may seem on days when we patients are feeling, yes, sick – as an annoyingly significant number of patients living with a chronic and progressive illness tend to feel on any given day. That’s why we’re sometimes called “patients”.
Frankly, I’ve also become increasingly weary lately over the explosion of industry interest in the engaged patient, defined by the Center for Advancing Health like this:*
“Patient engagement: actions individuals must take to obtain the greatest benefit from the health care services available to them.”
As I wrote here recently, industry has basically co-opted this concept of patient engagement as part of a strategy to help boost sales by cashing in on the growing ePatient movement.
Scratch any health care social media or online disease education site or patient support community, for example, and you’ll likely find it clogged with eager input from paid industry employees whose job it is to snag their particular product/app/device as many online mentions as possible while raising brand awareness. See also: “What Really Goes on in Your Friendly Online Patient Group?”
You may even find that such sites are fully funded by industry.
A recent firestorm of comments – many of them from Real Live Patients – greeted a Linked In announcement recently (posted by a paid employee of a private Toronto company that organizes conferences) when it was discovered that her National Forum on Patient Experience did not actually have one single Real Live Patient included in the event.
But while so many of us patients are feeling obligated to keep tap dancing through life being as engaged and empowered and positive-thinking as possible most days, I can’t help but notice that a lot of physicians out there seem to be far less swept up by the same engagement hype.
Steven Wilkins over at the health blog Mind The Gap, which focuses on improving the quality of communication between physicians and patients, seems to be noticing this, too:
“For too long, the focus among health care thought leaders has been all about fixing the patient. If only patients were more engaged, more knowledgeable, more compliant, more trusting, more prepared, ask more questions, etc.
“There is a significant body of research which suggests that health care provider behaviors (like their communication style) are just as responsible as patients for many of the shortcomings in health care today.”
Some examples from my own travels:
- Dr. Richard Frankel is a Regenstrief Institute research scientist at the Indiana University School of Medicine who studies ways to improve the doctor-patient relationship. He expressed this particular concern about doctor-patient communication: “We know that doctors ask patients whether they understand what was just discussed less than 2% of the time.”
- A well-known study by Beckman and Frankel published in the Annals of Internal Medicine found that patients were allowed to complete their opening statement expressing why they’re seeking medical care in only 23% of physician interviews. The average time to interruption was just 18 seconds. UPDATE: a study on how often internal medicine residents interrupted patient narratives found that the average time to interruption was 12 seconds after the resident entered the room; female patients were significantly more likely to be interrupted by the doctor than male patients were (Rhoades et al, Journal of Family Medicine)
- Dr. E. James Potchen at Michigan State University researched the degree of certainty that the most accurate radiologists had compared to the least accurate. He compared the top 20 radiologists studied (95% diagnostic accuracy) with the bottom 20 (just 75% accuracy) and found that the radiologists who performed poorly were not only inaccurate, they were also very confident that they were right when they were, in fact, quite wrong. (Journal of the American College of Radiology, 2006)
- The Archives of Internal Medicine published a 2008 Northwest University’s School of Medicine study on patients’ own preferences of exam room etiquette vs. the actual reality as captured on videotape during the study. In over half of all doctor/patient visits, doctors did not mention patients’ names at all.
- In a report called “Snapshot of People’s Engagement in Their Health Care“ published by The Center For Advancing Health, we learn that 91 percent of chronically ill patients did not receive a written plan of care when they were discharged from the hospital.
- I wrote here last year of a study reported by a team of researchers from RAND, UCLA, and UC Davis about the contrast between what physicians believe and what they actually do when it comes to seeing if their patients are staying on track with their medications. Here’s what they found:
- Although physicians uniformly felt responsible for assessing and promoting medication adherence, only a minority of them asked any detailed questions about adherence.
- Although providers often checked medications a patient was taking, they rarely asked about missed medication doses.
- Most cases of non-adherence detected during office visits were revealed through unprompted patient comments.
So despite years of published research warning that up to 50% of patients are not taking their prescribed medications as directed, it seems that doctors are still somehow magically expecting patients to be 100% compliant (a word, by the way, that I and many other patients find cringe-worthy).
Perhaps docs would rather just assume this to be the case unless patients volunteer their own non-compliance confessions – which according to this study, patients are unlikely to do unless confronted point-blank with a direct question.
With so many known reasons readily acknowledged by all parties (cost, distressing side effects, the burden of treatment, cultural and psychosocial issues, uncertainty about the actual need for medications, the challenge of managing multiple prescriptions, forgetfulness, etc.) you’d think that communicating with patients about taking prescribed meds or other treatment directives would be a routine practice for physicians.
In fact, you might even think that doctors would be as expected to be engaged with their patients as we are with them.
Dr. Dike Drummond, a family physician who provides burnout prevention and treatment advice for health care professionals at his site, The Happy MD, has this advice for his physician colleagues:
“Physician burnout can be thought of as one extreme of a continuum with career engagement on its other end.
“The feelings associated with full engagement in your career are ones of fulfillment and satisfaction. You feel your work makes a positive difference in people’s lives and your career has true meaning.
“Engagement is the emotional gold standard for career success – and at the opposite end of the continuum with physician burnout.”
When the Institute of Medicine (IOM) hosted a workshop for physicians in February called Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement, organizers heard directly from doctors about possible barriers to engagement partnerships with their patients, as reported in MedPage Today.
Several workshop panel members, including Dr. Sherrie Kaplan of University of California Irvine’s Health Policy Research Institute, observed that “doctors are not incentivized to allow patients to ask questions or take a greater role in their care.”
Translation of ‘incentivized’: they’re not making any money by helping you become more engaged in your own health.
Another workshop hosted by Health Affairs earlier that month had included comments from participants that “pay models need to be developed to reward doctors for helping patients take a greater role in planning their care.”
Dr. Jonathan Welch, an instructor in medicine at the Harvard Medical School and an emergency physician at Brigham and Women’s Hospital in Boston, told MedPage Today that providers need to find better ways to listen to patients and their families, adding:
“The healthcare sector, unlike other service industries, does not listen well to feedback from its consumers.”
The good news from the workshop? These six tips for doctors to become more engaged in their patients’ journey:
- Teach patients how to obtain and use their personal health information
- Teach consumers how to navigate the health system effectively
- Present patients with options and then listen to their concerns and feedback
- Establish a connection and relationship with patients and their caregivers
- Find new ways to listen to patients and their families
.
♥ This post was republished on The Center for Advancing Health’s site Prepared Patient Forum
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* Center for Advancing Health. 2010. White paper: “A New Definition of Patient Engagement: What is Engagement and Why is it Important?”
See also:
“We are all patients.” No, you’re not.
Why don’t patients take their meds as prescribed?
My lowly beginnings as an empowered patient
Study: “91% discharged from hospital without care plan”
Has industry co-opted patient engagement?
Say what? Do patients really hear what doctors tell them?
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Heart Sisters 
Reblogged this on Medical Malpractice: A Patient's Story and commented:
Spot on!! Fantastic post and incredible blog site!
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I SCAD’ed on three arteries during two heart attacks (see Spontaneous Coronary Artery Dissection).
I was paid dearly to perform risk management for my ex-employer….so I created my own medical risk management template in Excel and filled it out to the best of my knowledge.
My health risk was risk of cardiac death; broken down into contributing factors: SCAD event, congestive heart failure, sudden cardiac arrest; broken down into contributing factors for each contributing factor….and so on.
The physician was not aware of my detailed lifestyle, so this chart helped explain the risk and – together – we put together the mitigation plan. One page and in the chart. The cardiologists have never seen, much less used risk management, but were clearly on board with this approach.
I also prepare a written meeting agenda for each appointment. Helps keep things on track and is useful for taking notes. At the end of the appt, the cardiologist takes a copy of my notes for the record. We have open, clear communication.
Add your medical list to the agenda and save yourself having to chirp your way through their records management. The whole missed dose discussion can easily be addressed by adding a line to the patient intake forms that ask specifically if you have missed any dose of prescriptions and for an explanation if the answer is checked yes.
I also capture bp, wt, pulse and notes on an excel spreadsheet (ongoing). To prepare for the cardiologist appt, I create a simple scatter plot for the prior year that shows trending. Just like the leadership presentations – manage trends. Again, the cardiologists are speechless. My internist glanced, then never looked again.
Gone are the days when each physician had a RN performing records management. The patient must do it for themselves and their physicians to replace the RN monitoring control.
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Anne, you are the poster child for engaged patients! Thanks so much for sharing your risk management analogy here.
Q: why hasn’t anybody thought of this long before you did?!?!? I am contacting you privately to discuss this further. THANK YOU for sharing this.
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PS Forgot to add that it’s interesting that your cardiologists are “speechless” over your accomplishment, yet your internist appears unable to recognize a truly engaged patient when she appears right in front of his face.
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To clarify – he looked at it, but quickly saw no worrisome factors – constantly low bp, no weight changes worth noting, nothing unusual with pulse. The importance is that they can quickly see a trend. Time is money, so we can cover a lot of ground when the data is organized and easy to review.
When my stent plugged, I had hard data to show that my dynamic balance was off, my pulse was 20 points higher on the agility drills and the massive sweats. That data bought me a ticket into a nuclear stress test….I just wasn’t another whiny patient.
The cardiologists are impressed by the fact that their patient is monitoring their health and they are staring at the evidence. Imagine how easy their jobs would become if every patient could provide their summarized information? yeah, like they did 20+ years ago….
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Excellent post, Carolyn. Clearly people have to be engaged in their health / wellness long before they become healthcare patients. That is a massive undertaking, eh?
We take good health for granted, blithely overeating, under-exercising, sipping sodas all day long and taking other potentially hazardous stepping-stones to poor health. Aye, there’s the rub- “potentially.” We wait until we can no longer ignore the sign(s) of “better get that checked” to start thinking about health and wellness and the prospect of living other than how we have grown accustomed to (glazed doughnuts, comfort foods, watching from the sofa and “raiding the refrigerator.”
The “six tips” you highlight are efforts that health entrepreneurs can develop businesses around to solve.
Thanks for the insights.
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Thanks for your perspective, Kel. While I agree that many folks take good health for granted (try coping with a little heel blister as a potent example!) there remain many others who do consider themselves healthy right up until they become patients (I was a distance runner for 19 years before my own heart attack, for example).
To add insult to injury, we know that not ALL smoking/overweight/inactive people will go on to develop chronic and progressive diseases – very annoying of them! 😉
The six tips listed, courtesy of the IOM workshop for physicians, do not so much make up a tip sheet for business entrepreneurs to start developing The Next Big Thing in technology as they are more importantly a timely reminder to care providers (e.g. “listen to your patients!”)
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Ouch. It seems to me that there is a strong sense of a lack of patient accountability amongst US medical practitioners: for example, people with and without heart disease overeat (hence obesity), smoke, are sedentary (don’t exercise). The physician-patient relationship that once existed is being systematically destroyed by insurance companies, physician employers who insist on productivity over quality care, and trends such as hospitalists. Judgment is surpassing compassion.
I agree that both the patient and the physician should be engaged. The pendulum has swung from the paternalistic, omniscient physician model to the patient engagement model. There must be a middle ground.
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Hello Anne – I agree about that ‘middle ground’ need – hence this post! 🙂
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What might that “middle ground” look like, Dr. Stohrer? Patient education “house calls”? Weekly public library workshops? Scheduled visits by health coaches? mHealth / telehealth in lieu of most in-person contacts?
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