Paul Schneider PhD, ABPP
Disturbing declines in patients’ engagement with providers appear to negatively affect patients and providers, from my observations after over 35 years working within a variety of health care systems. Providers make the grossly inaccurate assumption that patients know how to play the patient role in the treatment team. This assumption often results in the patient too often seen as “non-compliant”, when, in actuality, the patient does not even know what their role should be.
Providers overwhelmingly say they want a collaborative treatment relationship with their patients. Yet, most patients think that a “good” patient does what the provider tells them to do. That’s particularly true in some subcultures. With vastly different views of the provider and patient roles in health care, is it any wonder that patients and providers become frustrated and angry with each other? Health literacy is a serious problem that often seems inadequately addressed.
How is a patient to learn how to be a “good” patient? How much do patients learn from their providers, in the limited time they get with the overwhelmed providers, with teams of providers that take turns seeing the patient? Patient education is often token, with little sense of what the patient actually heard, much less learned.
Seeing the obvious problems with this dynamic in the pain clinic I was working in at the time, I queried hundreds of patients, family members, providers, and staff, to come up with means of remedying the problem. Based on that, I put together an interactive Patient Orientation program designed to meet the patient where s/he is at. It included a Power Point and handout, designed for a group format of up to 30 patients and their support persons. We wanted them all on the same page. Feedback from participants was used to get patient perceptions of the program, and suggestions on how to improve it. The presentation typically went about 60-75 minutes. In our pain clinic, they would be contacted for their intake appointment upon completion of the Patient Orientation. That key to entry to the system dramatically reduced the “No Show” rate for initial appointments. That translated directly into cost savings for the clinic. Ironically, administration was afraid we would lose potential business if we required new patients to participate. But, people perceive more value in things they legitimately have to work for.
A key area that was addressed was patient and provider expectations of clinic practices and standards of care, including optimum provider and patient roles. The overall goal was not being a “Patient”, but a “Person with a full life who also has medical challenges.” Patients may need help recognizing that a pill is seldom the total answer. A biopsychosocial approach was outlined, with examples from their lives to illustrate the points. A key foundation was that the patient is the leader of his/her healthcare team, a role too important to give to someone else. The patient is expected to be accountable and responsible for scheduling, showing up, providing accurate information to the provider, and holding up their end of the agreed upon treatment plan.
An example of the value of the patient taking on a more active role is that medical records are loaded with errors, and, especially with chronic conditions, so voluminous that no provider can really know what is in the record. I noted, while reading thousands of medical records over the years, how seldom the medication record was accurate. Providers and support staff tend to get patients to answer in the affirmative when asked “Are you taking your medications as prescribed?” Then major decisions on those meds are made based on the false assumption that the medical record is accurate. Dangerous. We coached patients on how to help their medical provider get it right.
The patient and support person were advised to put together a 3-ring binder, with sections including a calendar with appointments noted, notes for and about each visit; summarized past medical history and family history; medications actually taken; past medications that worked or didn’t; names and contact info for all providers; surgeries and complications; imaging on a DVD; advanced directives; and lab summaries. Each current provider had a section. The 3-ring binder was preferred because it does not get lost as easily, the data does not get erased, information is easily accessible, and it’s easy to take notes and then confirm the accuracy of those notes with the provider. Marginal recall of the appointment is clearly not ok for their health. And when providers have perhaps thousands of patients, it is obviously unreasonable for the provider to carry the burden of continuity of care by themselves. Over time, many standards of care slowly erode.
Within the notebook, we also implemented a “Treatment Plan at a Glance”, a quick overview of what was agreed upon, and which elements were adhered to by both the patient and the providers. Failure to track progress, or lack thereof, on agreed upon treatment plan elements leads to a lot of misconceptions on progress and poor continuity of care.
One of the problems in comprehensive treatment plans is the issue of adherence to the agreed upon plan. Providers tend to lay out the plan and tend to make the patient action elements optional. They then call the patient “non-compliant” if they do not follow up. I challenged that perspective and suggested that we can negotiate with the patient the elements of a successful treatment plan, using proven clinical pathways and active listening strategies. As Health Psychologists, we can coach providers in obtaining high adherence, but it has to be a priority.
An example I used is that a surgeon does not present an ala carte list of pre-surgical tasks for the patient, and neither should any other provider. You’re either on board with the collaboratively negotiated program, or you renegotiate it. A good example here is physical therapy and follow-up with chronic pain. Focusing only on continuous prescription of narcotics, and making appropriate physical therapy optional is absurd, and ultimately could be considered unethical. That same principle would apply to most of the healthy lifestyle treatments so critical in managing chronic illness in a variety of clinical settings.
Like all educational efforts, the follow-up was critical. Providers and support staff were important in positively reinforcing the patients’ efforts and asked patients about when they did not bring in their notebook. Sadly, the most difficult integration was getting the providers on board, as it is quite difficult to change providers’ practice patterns. That has been complicated by the business of medicine pushing providers to see more patients. My most effective tool in getting providers to engage was my personal relationships with the providers and support staff, helping them create engaged patients. The providers noted that their best patients utilized the notebook system and made the providers’ jobs easier.
The costs of doing all these things well are obviously initially higher, and reimbursement systems are not tuned to that. However, in the long-term, the benefits in outcomes, patient engagement, provider and staff engagement, patient and staff turnover, reputation, and malpractice claims should be significant. Ethically, it would simply be doing the right thing, honoring patient autonomy, informed consent, mutual goals, and doing good.
Digging in to the intricacies of creating a functional collaborative patient education system gets complicated, and requires buy-in from staff, but yields great benefits. Developing a sense of agency, competence, and self-accountability in patients is our goal. As Health Psychologists, we have the skill sets to analyze the entire system of patient and provider behaviors, to facilitate optimal patient-provider relationships. Let’s step up and tackle these challenges.