By Jan Oldenburg, FHIMSS
Jan Oldenburg is a senior manager in Ernst & Young’s Advisory Health Care Practice. Jan, a nationally recognized thought leader on patient engagement, has extensive experience working with accountable care organizations to create and implement patient-centered care and patient engagement programs. Jan was previously a vice president of physician and patient engagement at Aetna Accountable Care Solutions and a senior manager of the Digital Services Group at Kaiser Permanente
Jan is a past president of the Northern California HIMSS Board, a HIMSS fellow and Vice Chair of the National HIMSS Connected Patient Committee. She served as the primary editor of Engage! Transforming Healthcare through Digital Patient Engagement, published by HIMSS press in March 2013. Oldenburg frequently speaks and writes about patient and physician engagement.
For too many years, we in healthcare have celebrated the “compliant” patient—the person who takes the care plan, the medication regimen, the instructions that we hand to him/her and lives by it. How many times have you heard a patient referred to as “non-compliant” — or used that language yourself? How often have we lectured patients on the importance of compliance — to a plan of treatment, to a medication list, to a diet and exercise plan?
A 2005 study entitled, “The Challenge of Adherence,” notes that this topic is well studied in healthcare:
“The research literature on patient adherence is extensive. Over the past 50 years, there have been 32,550 adherence related citations in PubMed and 10,087 in PsychLit. Of these citations, more than 2000 represent empirical research articles that involved the assessment of medical patients’ adherence to a variety of physician-prescribed regimens (medication, diet, exercise, lifestyle changes, etc).”
The topic is so well studied because it is so important: a paper published in May, 2012, estimated the U.S. cost of non-adherence for only three conditions (diabetes, hypertension, and dyslipidemia) was $105.8 billion in 2010, or an average cost of $453 per U.S. adult. Translate those health system costs into worry, family stress, hospitalizations and premature death, and you begin to have a true picture of the impact of people who are not “complying with” the plan of care recommended by their providers.
The Language of Passivity
And yet, let’s look at that word, “compliant.” Merriam Webster has as the first definition: “ready or disposed to comply: submissive.” Dictionary.com defines it as follows, “complying; obeying, obliging, or yielding, especially in a submissive way.” Oxford dictionaries define it as, “Disposed to agree with others or obey rules, especially to an excessive degree; acquiescent.” Notice that all of these definitions incorporate the idea of “submission” as a core part of what it means to comply. We often substitute the word “adherence” for “compliant,” but its definition incorporates the idea of “follower” or “disciple” as in this Merriam Webster definition: “a person who is loyal to a leader, group, or religion: a person who adheres to or supports a system or set of principles.”
This language is the language of passivity, of following orders, of following a leader. At the same time that we have taught patients that their role is to be passive in relation to the healthcare system, by following their doctors’ or providers’ orders, we also worry that patients are not taking responsibility for their own health — yet we can’t have it both ways. If we are truly to develop a culture where patients and their caregivers are fully engaged in their health and healthcare, we must change our language about “compliance” and “adherence” to language that incorporates the role of the patient and caregiver as partners in deciding on a plan of action rather than passive recipients.
A New Definition of Engagement
The Center for Advancing Health did a wonderful job of changing this language when they defined patient engagement as follows in their landmark paper, “A New Definition of Engagement: What is engagement and why does is it important?” They define engagement as:
“Actions individuals must take to obtain the greatest benefit from the health care services available to them.”
“This definition focuses on behaviors of individuals relative to their health care that are critical and proximal to health outcomes, rather than the actions of professionals or policies of institutions.
“Engagement is not synonymous with compliance. Compliance means an individual obeys a directive from a health care provider. Engagement signifies that a person is involved in a process through which he or she harmonizes robust information and professional advice with his or her own needs, preferences and abilities in order to prevent, manage and cure disease.”
In no way do I mean to suggest that we can ignore the approximately 40 percent of patients who do not follow recommended treatment approaches, with adverse consequences to their own health, nor can we afford to ignore the many causes of the problem. Rather, I would argue that the mental model we are using may in fact promote the very problem we are seeking to solve.
Re-imagining the Patient Relationship
Rather than a model where providers distribute treatment plans and regimens to patients and the patient role is to unquestioningly follow the instructions, we need to reimagine the interaction and the relationship. Imagine doing care planning withpatients, rather than to them. Imagine what a collaborative treatment plan would look like, informed by a discussion with the patient and his/her family about their lifestyle, perspective, motivations and barriers. Imagine involving the patient’s community—online and offline—in creating a care plan that they will help to support. Imagine shifting the language from “adherence” to “collaboration” and from “compliance” to “partnership.” Imagine incorporating goals that are designed by the patient, in his/her language rather than only those designed by the care provider or external entities.
What if our systems reflected this collaborative approach by creating ways for patients and family members to update and revise treatment plans and goals, spurring discussion with providers about what’s working and what isn’t? What if we retooled processes and procedures to enable providers and care managers to have these discussions—and supported both the patients and providers with resources and tools?
Breaking Free of Old Attitudes, Assumptions
Certainly, there are providers who have known this all along, who have taken the time to work with the patients and families they see to ensure that these conversations happen. Still, because patients and families have grown up in a cultural context that frames their role passively and reinforces it with both language and attitudes, it is hard for both parties to the transaction to break free of the assumptions.
Dr. Rachel Zimmerman, a physician who is also an MS patient, talks about this dynamic in her blog post, “Patient Angst: When You Just Have To Say ‘No’ To The Doctor.” After discussing how hard it is to make the choice to be “non-compliant,” she notes:
“Being on the patient side has changed me as a doctor. Now, I see more clearly that no medical decision is simple. While my job is to make recommendations to patients based on my medical knowledge, there is no one answer. Ultimately, what is “right” is based on a multitude of factors. Living with illness is a dynamic process, and we need to make room for different, and perhaps constantly shifting, approaches. ‘You are in charge,’ I tell my patients.”
In Pursuit of a Dynamic Partnership
Despite our best efforts in partnership, there will still be patients who want their doctors to take control and are resistant to taking action to benefit their health, as well as those who — despite their best intentions — fail to meet their goals. I am hopeful we will find these patients to be the minority, not the majority. Their presence, however, calls on us to find new ways to reach these patients and help them take the first steps toward engagement.
Until we reimagine patient’s roles and find new language to describe these interactions, however, I think we are unlikely to make significant headway in helping individuals “harmonize robust information and professional advice with his or her own needs, preferences and abilities in order to prevent, manage and cure disease.”
Originally published on www.EngagingPatients.org, an online community that is focused on sharing best practices and encouraging thoughtful discussion about engaging patients and families in their care.