Is the United States the Only Country Into "Patient Engagement?" (plus a definition)

Patient engagement is there too!

The answer is no.  Check out this paper in Health Affairs that defines patient engagement as ordinary people who manage their own health by shifting the clinical paradigm from determining “what is the matter?” to discovering “what matters to me?” 

The authors point out that patient engagement is a phenomenon in Great Britain, the United Arab Emirates, India and the United States:

England's "Big White Wall" is an online community accessible via handhelds or computers where persons with psychological distress can find support in managing their care.  Participation is anonymous and is covered (£100 for 6 months) by some of the local National Health Service organizations or by employers directly. There are questionnaires, guided support programs, moderated discussion groups and individual 'live" therapy (£75 per session). Supporters point to data that suggests there are fewer physician visits that result in a net savings.

The United Arab Emirates' pattern of tribal consanguinity has led to a high incidence of inherited genetic disease. In response, the UAE recruited and paid student "ambassadors" to lecture about genetic screening among the country's university student population. That plus mandated screening plus coverage of the cost has led to an increased tribal acceptance of screening for thalassemia and sickle cell disease.

In India, a checklist was promoted and given to new mothers to help them spot danger signs in their babies within a week of birth. The checklist was loaded on the mom's cell phones, which was sent prompts about looking for problems, such as breathing difficulty or poor feeding. If there was an "yes" answer to any question on the list, the health system was alerted.

In the U.S., Boston's Deaconess Hospital identified a hundred patient and family "advisors" who sit on ten committees and give input into various quality improvement projects in the institution.  This has facilitated the ability of patients and families to view their test results on line, get prescription refills or trigger an inpatient concern.

Just What Is "Patient Engagement" in Health Care?

According to this paper by Barello et al in the Journal of Participatory Medicine, the muddled answer depends on when it was used as well as your professional background.

Using a densely written "lexicographic qualitative analysis" to dive into over 250 scientific papers, the authors found that the term has evolved and may still be in its infancy. When it first began to regularly appear about 15 years ago, the term "patient engagement" was used in behavioral and nursing contexts to describe a dimension of established one-on-one provider-patient care.  Since then, it's been used in a biomedical sense to portray a new relationship between a system and a patient.

The authors point out that how "engagement" is achieved depends on a spectrum of patient perspectives that range from unaware to really motivated.  The Population Health Blog suggests that one way to think about it may be the transtheoretical "readiness to change" model.

The one thing that has been missing in the scientific papers is the patients' perspective.  Ironically, no one has asked and cataloged their answers in any systemic manner.

Last but not least, it's unclear if real purpose of achieving patient "engagement" is greater autonomy, relationship-building, making health care more responsive, reducing costs, or improving public health.  As a result, it's a catchphrase has become all things to all people.

While this lacks the all-important input of folks like this and may also be an exercise in tautology, the Population Health Blog managed to extract something of a definition for the term: a span of cognitive processes that seeks participation, compliance, learning  and self-management in health care, including disease, prevention and health.

Image from Wikipedia