Shifting the Paradigm

Achieving Patient Engagement: No Easy Task

Sandra, a retired teacher with hypertension, has been Dr. Clarke’s patient for 20 years. When she arrives for her annual visit, she is given a clipboard with a paper form that asks her to list all of her medications and fill in her medical history, the same form she filled out last year. Sandra has brought with her a list of blood pressure results that she has tracked over the past several weeks to discuss with the doctor.

During the 15 minute visit, they briefly discuss headaches that Sandra has been experiencing. After a quick but thorough examination, Dr. Clarke asks Sandra to continue tracking her blood pressure and send a weekly email to the nurse who will review the data for anything unusual. The doctor prescribes a medication to help with the headaches and suggests that Sandra schedule another appointment in six months, or sooner if the headaches persist, or if there are any other problems. Dr. Clarke encourages Sandra to email her if she has further specific questions about the treatment plan.

Engagement, that’s the Question

Doctor Listening to Patient Talk About Her Medical SymptomsIs Sandra an engaged patient? Is Dr. Clarke an engaged clinician? Does the arrangement that asks Sandra to track her blood pressure and send weekly reports to the nurse involve her more integrally in her care? Does the fact that Dr. Clarke has opened the communication pathway by encouraging Sandra to email her at any time portray this patient/doctor relationship as a partnership that fosters collaboration? Should Sandra have access to the visit notes from her health record? Does any of this change the quality, efficiency, and cost of care for Sandra?

This case study represents a typical scenario of a 2016 office visit where patients do not yet have full access to all the information about their care, and where many clinicians are trying to involve their patients in managing their health. It reflects a gradual transition to patient and clinician engagement, which is becoming more common in health practice today.


Rules for the 21st Century

The Institute of Medicine (IOM) issued a ground-breaking report entitled Crossing the Quality Chasm in 2001in which they outlined ten simple rules for the 21st century healthcare system, including these examples:

Rule 1: Care Based on Continuing Healing Relationships

Rule 2: Customization Based on Patient Needs and Values

Rule 3: The Patient as the Source of Control

Rule 4: Shared Knowledge and Free Flow of Information


Fulfillment of each of these rules would bring us closer to engagement by patients and clinicians. However, today, a decade and a half later, we are still grappling with how an open, and collaborative patient/clinician relationship, that engages both parties interactively, can succeed in fostering best practices that results in consistent high quality medical practice and lower cost of care.


Moving from Passenger to Driver

The Society for Participatory Medicine was founded on the premise that e-patients — empowered, engaged, enlightened, educated patients— promote the concept of participatory medicine, a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.

Engagement: A Two-Way Street

There is significant evidence to suggest that patients who are more actively involved in their healthcare experience better health outcomes and incur lower costs. However, it is not enough for patients alone to actively manage their care. Engagement involves engaged clinicians who empower their patients with information, education, and a team approach to care that includes all of the stakeholders including family caregivers, nurses, therapists and others involved in the care process.


Fostering Patient Engagement

There are several specific and achievable goals to foster patient engagement including:

  1. Open dialogue and full information at the point of care, where the clinician and the patient discuss in detail the elements and options for treatment, based on medical evidence, patient preferences and clinical judgment.
  2. Shared decision making, where the patient and clinician collaboratively weigh the options and make decisions on the best treatment choices that takes into consideration the patient’s values, personal circumstances, lifestyle and preferences.
  3. Patient activation: providing the patient with the skills, ability, and willingness to manage their own health and health care, and supporting their actions with secure communication options, viable user-friendly apps and devices and educational resources.

Striving for Full Participatory Health Care

Doctor and Patient TeamThe truth is that in an ideal world every patient would have the knowledge, technical experience and desire to engage and take charge of their health care. Every clinician would truly commit to working with their patients to help them succeed. However, we do not live in an ideal world. As a result, the transition to full participatory health care is going to take additional time, energy and effort by everyone involved.


Nancy B. Finn, M.Ed. Nancy B. Finn is a journalist, thought leader and patient advocate, focused on patient empowerment and engagement through the deployment of digital communication technology. She is the author of four books, including e-Patients Live Longer, the Complete Guide to Managing Health Care Using Technology . She blogs for the Society for Participatory Medicine at, and publishes her own blog. HealthCare Basics. She also is a contributing columnist and reviewer for the Journal of Participatory Medicine, and is a speaker at many national and international forums. Nancy is a member of the Board of Overseers and the patient advocate on the Safety and Quality Committee at Mount Auburn Hospital in Cambridge, MA, and the consumer advocate and member of Beth Israel Deaconess Medical Center Board.. She is also the Secretary and a board member of the Society for Participatory Medicine.

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