Why Are We Discouraging Patients From Participating In Healthcare?

Post Written By Guest Blogger, Andy DeLaO

The team at My Ideal Patient Experience was surprised and disappointed to read a letter in The Washington Post written by Debra Zalvan, Vice President of Marketing at a health care firm focused on patient engagement.  In the letter, Ms Zalvan states quite clearly that she believes (and we can assume it is the position of her company too) that “patients don’t want to be equal partners with their health-care providers”, but rather, “they want their physicians to take the lead in patient-provider communication”. While this may be the case with some patients, our own personal and collective experience does not bear out Ms Zalvan’s assertions.

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systematic review of patient preferences for shared decision making  indicates 71% of patients in studies  after 2000 preferred shared decisions. A NEJM article, “Shared Decision Making — The Pinnacle of Patient-Centered Care” states “Clinicians, in turn, need to relinquish their role as the single, paternalistic authority and train to become more effective coaches or partners”

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Gone are the days when individuals passively received health information and interventions, assuming that a provider held all the answers. It is increasingly common for patients to find resources and/or seek out additional information online.  The Information Age has ushered in a new era of shared decision making. More readily available evidence-based information allows patients to become active participants in decisions about their care.

There is considerable evidence that patients want more information and greater involvement. Social media can play an important part in supplementing and reinforcing information provided by clinicians, and helping patients become more informed and activated in their own care.

As argued by Mandl and colleagues in the New England Journal of Medicine, these developments represent “tectonic shifts in the health information economy”with far-reaching consequences for patient involvement, as the gravity shifts away from health care providers as the sole custodian of medical data. In an article entitled, Social Medicine: Turning to Twitter to Feel Better, cardiologist, Dr Kevin Campbell, MD, wrote, “Ultimately, when patients have a better understanding of their disease process and are personally invested in the day-to-day treatment and management of their disease, outcomes improve.”

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Perhaps the most short-sighted of Ms Zalvan’s statements is that “patients should be discouraged from searching for health information online” because “online sources are often unreliable and conflicting.”  Patients are searching for health information online and we cannot now reverse this growing trend.

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According to the Pew Research Center’s Internet and American Life Project, thirty-five percent of U.S. adults say that at one time or another they have gone online specifically to try to figure out what medical condition they or someone else might have. The Pew survey reported that most online health seekers were satisfied with the information they found on the Internet.  Eighty-two percent said that they frequently found the information they were looking for online and sixty-one percent said online information improved their care. Survey respondents stated that the information they found online helped them feel less fearful of the unknown and more capable of asking well-informed questions and evaluating treatment options.

A study published in the Journal of Family Practice reported that that 88% of patients went online post-visit. The most common source used was others’ forum posts (91%). The most common reason was curiosity (68%). Dissatisfaction with the physician’s performance motivated information seeking for 40% of respondents.

There are many reliable, authoritative online resources available to patients:  government websites (e.g., cancer.gov and cdc.gov), disease-focused nonprofits and advocacy organizations (e.g., diabetes.org), hospitals (e.g., clevelandclinic.org), research centers (e.g., danafarber.org), medical society pages written for patients (e.g., asco.net), pharmaceutical firms pages with drug information, medical journals, and science reporting services (e.g., Medscape.com).  Online patient communities know these sites and can direct fellow patients to resources as needed.

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The internet is a vast resource, and to realise its full potential it is necessary to direct patients to high quality information and where necessary, teach them how to assess the quality of information. Instead of discouraging patients from searching for information online, physicians should be creating and curating their own medical resources online; or at the very least pointing the way to online sources of evidence-based health information.  Health care professionals have an obligation to create educational content to be shared across social media that will help accurately inform consumers about health related issues and out shine misleading information.

In addition to helping curate reliable content for patients physicians can participate in OpenNotes. One of the most relevant sources of information for patients is the physician visit notes. The OpenNotes initiative is a change in practice giving patients access to their physician visit notes. The results of the pilot study published in JAMA in 2012 showed 99% of patients wanted to have continued access to their notes at the end of the study and none of the physicians elected to pull out. Patients reported feeling more in control of their health and better compliance with taking their medications. Often the physician and patient composed the visit notes jointly at the end of the visit resulting in a shared understanding and commitment to the decisions made.

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Patient engagement can and should take many forms and, while Ms. Zalvan’s assertion that not all patients want to take the lead in their care is technically accurate, the reality is many patients are unaware they have a voice. With an aging population and a rise in chronic diseases, ‘Doctor Knows Best’ is not a sustainable methodology for the future of medicine. People deserve to be partners in their own healthcare and it should not be assumed that they would like their physician to ‘take the lead’ in any other form or fashion that starting with the phrase, ‘What are your goals?” Whenever feasible, place the ball in the patient’s court first, they have the most skin in the game. With rapidly accelerating healthcare costs, it surprises and disappoints us to see that a healthcare leader would discount the value of expanding patient knowledge and establishing patient-led goals in providing value-based care.