“Patient-centered care” was a term coined in the 1980s as a professional response to increasingly vocal patients’ demands for genuine empowerment. Three decades later, patient-centeredness is still necessary, but powerful economic, technological and social forces are bringing about new relationships in healthcare that patient-centeredness fails to adequately encompass.
In a recent issue of the BMJ, I propose “collaborative health” as an umbrella term to describe a shifting constellation of collaborations for maintaining wellbeing and for sickness care that are being shaped by individuals based on their life circumstances. Sometimes the traditional care system will be involved in this new process. Sometimes, no matter how “patient-centric” or “person-centered” the care system may be, the traditional care system won’t have a role at all.
New Paradigm Emerges in Digital Domain
The most visible evidence of an emerging new paradigm is in the digital domain, where individuals increasingly can find, create, control, and act upon an unprecedented breadth and depth of information. For example, PatientsLikeMe filters patient-reported data on more than 2,700 conditions through its analytic tools on behalf of more than 500,000 individuals collaborating in an independent learning community. That data is often shared by patients with their doctors, but it is the patients doing the “engaging” and setting the terms of the collaboration.
Less publicized, but just as significant, are the actions being taken by private and governmental organizations bearing financial risk for medical costs as they reach out to the vulnerable and the less tech-savvy.
In my article, I give the example of a vendor who places biometric sensors in the home of an older adult wishing to “age in place.” The sensors transmit information to a computer center, where algorithms flag potential problems; e.g., an alteration in nighttime toilet habits could mean a possible urinary tract infection. When an alert is triggered, a company-contracted clinician (not the family doctor) reaches out to the individual. This kind of collaboration to maintain wellbeing, often independent of the traditional care system, is taking place worldwide, whether paid for by families, a health plan or, in Italy, even a municipal government.
Collaborating for Population Health
Collaborations for maintaining wellbeing are not solely technology-driven, however. Organizations being held economically accountable for a population’s health problems are increasingly focusing on social determinants of health in unusual collaborations: a Medicaid plan finds a member a job, an accountable care organization matches enrollees with affordable housing and a MedicareAdvantage plan takes responsibility for home delivery of a meal.
We’ll always need medical professionals to minister to the sick, of course, but the doctor-patient relationship will change there, as well. Collaborative health provides what I call “a framework for understanding how the traditional and non-traditional will coexist and interact in a healthcare ecosystem with new players and relationships.” In that context, the professional response to a new power dynamic in which they lose some of their control will be crucial.
I suggest three core principles that the traditional care system should adopt to proactively and voluntarily share power:
• The first principle is shared information, including opening up the complete electronic health record for patients to read, comment upon and share.
• The second is shared engagement: collaborative health is multidirectional and multidimensional, involving non-traditional actors such as online communities and technology vendors.
• The final principle is shared accountability for the ethical, legal and clinical issues that will inevitably arise in multi-stakeholder collaborations in relation to care continuity, communication, data privacy and other questions.
As economic, technological and social changes give rise to collaborations the pioneers of patient-centeredness never could have imagined, there’s no more important task than building this new relationship of mutual trust.