Engaging and Empowering Patients

Tom has been very outspoken about problems with the healthcare industry (a few examples). In August, he spoke at Harvard on a panel called Engaging and Empowering Patients for Quality and Safety, which was part of the Eleventh National Quality Colloquium: The Leading Forum on Patient Safety, Quality Enhancement, and Medical Error Reduction. His fellow panelists were Michael Millenson, author of Demanding Medical Excellence and president of Health Quality Advisors, Rajni Aneja, EVP of the Joslin Diabetes Center, and "e-patient Dave" deBronkart, former cancer patient and patient care activist. (To see the speeches, go to the end of this post for the links.)

All of the panelists are working toward a common goal, well summarized by the title of Millenson's book: Demanding Medical Excellence. Medical Excellence includes reduction of medical errors, greater quality of care, improved communication between patients and healthcare professionals, increased decision making power for patients, as well as the ability to manage their own care. While Excellence is an aspirational word, the current state of the healthcare industry demands more than interest in lofty goals. The statistics on medical errors are not improving, and it is extremely difficult to change the habits and practices of an entire industry. Not to mention the fact that you'd be hard pressed to find anyone who hasn't been frustrated or angered by a healthcare experience whether its their own or their loved one's.

One clear example of the persistence of medical errors was shown in the article, "Study Finds No Progress in Safety at Hospitals": "The study, conducted from 2002 to 2007 in 10 North Carolina hospitals, found that harm to patients was common and that the number of incidents did not decrease over time. The most common problems were complications from procedures or drugs and hospital-acquired infections.... Dr. Landrigan's team focused on North Carolina because its hospitals, compared with those in most states, have been more involved in programs to improve patient safety."

Panelist "e-patient Dave" deBronkart passed along an anecdote from Atul Gawande of a man who was in a head on crash. His recovery was a medical miracle, he only lost his spleen. Two years later, he lost his fingers and toes from an infection because he was not given the standard three vaccines after his splenectomy. DeBronkart was using the story as an example of the lack of information given to patients and their families. He raised the questions, "What if the family had googled splenectomy? What if they'd found that giving three vaccines was standard practice? What if they'd paid close attention and asked if he'd received them?" It may seem to be the doctor's place, but it's increasingly true that families and advocates can make a big difference in the quality of care their loved one receives. [Ed. note: anecdote corrected]

My personal experience bears this out. What seemed like a minor detail to the pharmacist—switching a prescription refill from one generic manufacturer to another manufacturer—caused severe nausea, vomiting, and five days of debilitating migraines. One would think that the same drug in the same dose would not cause such a reaction. The only change was the companies that manufacture it. What's even more frustrating was the fact that several healthcare professionals couldn't identify the cause of the symptoms as the drug switch. Could it be stomach flu? A sudden onset of migraines? It wasn't until I did online research and read other patient stories identical to my own that I confirmed the cause of my symptoms. I don't have to ask, I already know my story brings to mind another story in your own experience (Steroid shot for back pain, anyone?).

Panelist Millenson colored a stark picture by asking, "How many doctors have to die before our current level of medical errors becomes a 'crisis'"? Answering his own question, Millenson invoked the AIDS epidemic, which was termed a crisis not after reaching a particular patient death toll, but only after 3-10 medical professionals died from the syndrome. Moving on from medical errors to patient care issues, Millenson laid out the root of the physician-patient communication problem by quoting the American Medical Association's panel on ethics from 1847. It stated that the patient should obey the physician. This may explain physicians' longstanding paternalistic and patronizing attitudes and practices, extending from withholding information from patients to taking patients' tissue without consent (e.g., the case of Henrietta Lacks). While there may be a few curmudgeonly holdouts, the majority of healthcare professionals today are not expecting to be obeyed so much as to be in a problem-solving relationship with their patients. According to Millenson, the change is more recent than you would imagine. Today, clinicians are being taught more about shared decision making and coordinated care. He said that wasn't happening twenty years ago.

Millenson's intention, of course, was to highlight our lack of progress in reaching anything close to Medical Excellence. That's not from lack of effort in some areas. There are beacons of hope if you begin to look.

The au courant fascination with behavioral economics—notably with the success of such books as Freakonomics, Predictably Irrational, Nudge, and Switch—has popularized behavior experiments producing counter-intuitive results. For example, Chip and Dan Heath, in their book Switch, feature a study involving nurses who administer medication. The nurses who wear bright vests indicating they need a cone of silence around them with no disruptions (meaning even doctors can't speak to them), reduced their errors drastically compared to those who did not wear the vests. As it turned out, a concern for fashion sense was more dangerous than anyone expected. Continuing with seemingly irrational or unexpected experimentation can only lead to greater learning.

Peter Pronovost's work with checklists was similarly dismissed at first. Doctors claimed they knew their procedures thoroughly. But after instituting his simple, common sense checklists, hospitals have saved thousands of lives and millions of dollars. His checklist protocol is now being used across the country. Tom mentioned the Mayo Clinic during the panel, and how their organizational culture's focus on collaboration has impacted their physicians. The physicians report that they feel like they're part of an organism, not a single cell, and therefore they feel like they're doing a better job. Working closely with peers would certainly lend itself to new learning and rigor rather than a lone wolf environment.

As you can see, it is not all doom and gloom on the horizon. Change for the better is starting to gain momentum. The panelists discussed the repercussions of errors, and how significantly they can be mitigated by the simple act of apology. Rather than an admission of error leading to disaster, healthcare professionals are discovering that apologizing can be an enormously effective salvo and balm.

The benefits reaped from greater patient involvement at all levels of care was the overwhelming message from the panel. Millenson described how bringing patients into hospital boardrooms can provoke high levels of change. He also mentioned the Robert Wood Johnson Foundation's Open Notes Project: "The OpenNotes project tests the radical yet simple idea that physicians' notes should be for the patient, not just about the patient. This 12-month study has primary care physicians sharing with their patients the notes they record from office visits through a secure electronic medical record.... The OpenNotes team will assess whether the intervention effectively breaks down communication barriers among physicians and patients and promotes shared decision-making, making the relationship more open and democratic."

Millenson also described how nurses have been taught to think they're patient educators, an improvement over past practices of dispensing medical care only, but educating implies delivering information from on high. Currently, the patient-friendly attitude of defining nursing as "self-management support" is recommended. The intention being that nurses help patients manage their own health problems.

Shifting the power from the physician to the patient is not a smooth transition. DeBronkart described how patients typically act in a healthcare situation this way:
"We don't want to seem pushy, so we're afraid to speak up. Doctors then assume that we want them to make the decision for us. Doctors need to invite the patient to communicate by asking, 'What's important to you?' Think about how you would like to be spoken to. Give the patients time, listen." He provided a powerful example of the importance of listening to the desires of the patient. A woman at 50 decided against a physician-recommended double mastectomy. She said, "I understand I'll die at 75 instead of 90, but I want to keep the breasts." Only the patient can determine what the correct choice about her/his healthcare is. In order to make that choice, patients need the most complete information.

Tom "You can't shrink your way to greatness!" Peters is not known for his reserve, but admitted his own fear of speaking up in conversations with his doctors. The panel as a whole concluded that the all-too-common reticence of patients to make their wishes or questions known has to change.

The essential takeaways for the general public from the panel were: 1. Be more aggressive with your healthcare professionals, despite your fear of being rude. 2. Pay attention. 3. Ask more questions. 4. Check your own electronic medical records for errors when you're healthy. Don't wait until something happens.

All the panelists agreed that the quality of healthcare will improve—and perhaps the achievement of Medical Excellence can only happen—once patients are empowered and involved more closely in the medical decision-making process.

Tom was impressed by the content of the panelists' talks and noted that they were not made available to the public. With a little work, we were able to obtain some of the speeches and would like to share them with you. To see "e-patient Dave" deBronkart's speech, click here. To see Michael Millenson's speech, click here. To see Tom speak, followed by the question and answer period, click here. Two technical notes: first, unfortunately, the speakers' slides are not visible in the video. Second, while we've not included Rajni Aneja's speech, she is doing some very innovative work using technology to eradicate diabetes, and we do encourage you to follow her amazing work at the Joslin Center.