Giving Patients a Stronger Voice

We can empower patients by providing high quality educational materials, encouraging medical self-care, and by finding ways to incorporate patient-generated health data into clinical practice.

John Halamka, M.D., president, Mayo Clinic Platform, and Paul Cerrato, senior research analyst and communications specialist, Mayo Clinic Platform, wrote this article.

"I started feeling like a mechanic working on cars that were wrecked by people who’d never learned to drive. What’s needed is not more mechanics but a little driver’s education."

The late Dr. Tom Ferguson’s comment was a reaction to seeing so many hospitalized patients whose conditions could have been averted had they taken advice on a healthy lifestyle to heart. With that realization in mind, he launched Medical Self-Care, which provided readers with the tools to address the underlying causes of many chronic diseases. His magazine offered the kind of “driver’s education” that changed lives. This is just one way that patients can gain a stronger voice in their own care. There’s also a need for shared decision making, incorporation of patient-generated health data into clinical practice, and recognition that we as health professionals can learn a lot from well-informed patients.

By one estimate, about 80% of all chronic diseases are caused or exacerbated by lifestyle choices. Most clinicians are familiar with these choices, including bad diet, lack of exercise, cigarette smoking, and emotional stress. They are also all too familiar with the resistance they face when trying to convince patients to make changes. But even when we are successful in getting the message across, we still realize that improvements in lifestyle habits are only part of medical self-care. Adherence to routine preventive care, including vaccinations, cancer screenings, serum cholesterol testing, blood pressure screening, cultivating a healthy social network of friends and family, choosing a primary care provider, and taking advantage of available mental health services all play a major role in maintaining wellness and reducing the risk of disease. And for those patients who must cope with existing diseases, medical self-care includes educating themselves on how to manage their condition.

Unfortunately, given the current insurance reimbursement environment, most medical practices have a very limited window to discuss these issues at length with their patients. But that does not prevent them from providing patients with printed and online resources. Several free and paid resources are worth noting:

  • Centers for Disease Control and Prevention has fact sheets on atrial fibrillation, heart failure, stroke, hypertension, differences between how men and women present with heart disease, immunization, tuberculosis, and a wide variety of other topics.
  • American Heart Association offers patient information on aortic aneurysm, acute coronary syndrome, peripheral artery disease, and venous thromboembolism, all of which are included in its Patient Education Catalog.
  • Mayo Clinic offers a virtual encyclopedia of patient education materials, organized in alphabetical order. There is also a symptom checker, encyclopedias that discuss tests and procedures, drugs and supplements, as well as a virtual bookstore to buy ebooks and print versions.

Utilizing patient-generated health data (PGHD) is another way to empower patients. The Office of the National Coordinator for Health Information Technology (ONC) defines PGHD as “health-related data including health history, symptoms, biometric data, treatment history, lifestyle choices, and other information-created, recorded, gathered or inferred by or from patients or their designees.” Having access to this kind of data can significantly improve a clinician’s window into patients’ lifestyles, healthy and harmful habits, as well as a long list of biometric parameters that can guide treatment.

George Demiris, Ph.D., with the University of Pennsylvania School of Nursing, and his colleagues emphasize that: “PGHD tools are perceived as ways to capture and even “amplify” the patient voice in the health care system and strengthen the patient-provider relationship, increasing patient safety and information access.” Such tools include implantable devices, wearable devices like exercise trackers, blood pressure monitors, pulse oximeters, and glucose meters. There are also devices and mobile apps that can measure mobility, sleep quality, nutritional status, social interactions, psychosocial stress levels, and water/air quality.

PGHD is slowly finding its way into the clinical decision-making progress, although we have a long way to go before we see full routine integration into our EHR systems. This data can be used to improve progress notes, status dashboards, and to inform interview questions during face to face interviews with patients. Ideally, PGHD will improve shared decision making as well.

Th emergence of patient advocacy groups in recent years has also helped to facilitate shared decision making in medicine. The philosophy of such organizations is summed up by the National Patient Advocate Foundation (NPAF): “The health care system should work for all of us. Let’s change it together.” Groups like this can address several related issues that impact patients’ ability to obtain high quality care including the lack of health equity, the costs of care, inadequate health literacy, poor care planning and coordination, and problems obtaining adequate insurance coverage. 

Changes in technology, policy, and culture are moving us toward more participatory medicine, where patients and providers work together as collaborators instead of customers and vendors.

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