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Achieving Patient Engagement: No Easy Task

EngagingPatientslogo I wrote this for was launched in June, 2013, led by the belief that patient engagement is central to the transformation of healthcare. Their Guiding Principles include:

We are a purpose-driven organization that makes information readily accessible to the healthcare community.

We aggregate disparate information i.e. news, learnings and best practices in order to inform, engage and align the broader healthcare community in our common mission.

The focus of the community is guided by our Advisory Board and the content by the members, is powered by Standard Register Healthcare

My work in the e-Patient movement through my writing and speaking aligns directly with and I am delighted to share this blog.


Sandra, a retired teacher with hypertension, has been Dr. Clarke’s patient for twenty 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.

What is  Patient Engagement?

Is 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.

The Institute of Medicine (IOM) issued a ground-breaking report entitled Crossing the Quality Chasm in 2001 in which they outlined 10 simple rules for the 21st century health care 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.

Participatory Medicine Fosters Engagement

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.

There is significant evidence to suggest that patients who are more actively involved in their health care 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.

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.

Shifting the Paradigm, When?

The 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.

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