When “patient centred” is no longer enough: the challenge of collaborative health: an essay by Michael L Millenson
BMJ 2017; 358 doi: https://doi.org/10.1136/bmj.j3048 (Published 05 July 2017) Cite this as: BMJ 2017;358:j3048
- Michael L Millenson, president1
- 1Health Quality Advisors, Highland Park, IL, USA
- 2Feinberg School of Medicine, Northwestern University, Chicago, IL, USA
- mm{at}healthqualityadvisors.com
Biography
Michael L Millenson is a writer, consultant, researcher, and activist for better, safer, and more patient centred healthcare.
His book Demanding Medical Excellence: Doctors and Accountability in the Information Age achieved critical acclaim. As a healthcare reporter for the Chicago Tribune earlier in his career, he was nominated three times for a Pulitzer prize.
A quarter of a century ago, researchers proposed “patient centred care” as a conceptual framework that “consciously adopts the patient’s perspective” about what’s important in interactions with providers and institutions.1
Today, technological, economic, and social changes are moving healthcare in directions unanticipated by the patient centredness pioneers. It’s not that patient centredness no longer pertains; rather, it’s being subsumed under these larger forces reshaping 21st century medicine. I suggest “collaborative health” as an umbrella term framing how clinicians should respond.
The Victorian parliamentarian and novelist Edward Bulwer-Lytton declared, “A reform is a correction of abuses; a revolution is a transfer of power.” Patient centred care began as a correction of abuses, a response to patients being treated like “imbeciles and inventory.”2 Decades later, what’s claimed to be patient centred still too often reflects a paternalistic attitude, ironically expressed by comedian Stephen Colbert in a different context on the Late Show in 2015: “See what we can accomplish when we work together by you doing what I say? It’s called a partnership.”
In contrast, collaborative health describes a shifting constellation of collaborations for sickness care and for maintaining wellbeing that is shaped by people based on their life circumstances. The result is not reform, but a transfer of power in which the traditional system loses some of its control. That system will often be part of wellbeing and care relationships—providing patient centred, person-centric, or collaborative care—but other times (and not by choice) it will be excluded.
New collaborations dissolve old boundaries
The digital health domain provides some of the most visible evidence of this shift. Increasingly, people can find, create, control, and act on an unprecedented breadth and depth of information. For example, according to its website the for-profit patient network and research platform PatientsLikeMe has amassed more than 520 000 patient profiles for more than 2700 conditions, filtering data reported by patients through analytical tools in an independent online collaboration.3
Although most PatientsLikeMe users are American, participation in this and similar platforms will grow as the digital divide continues to diminish. In 2015, more than half of adults in 21 emerging and developing countries reported using the internet or owning a smartphone (rising to 87% in 11 advanced economies).4 In 2017, an estimated 8.4 billion objects were part of the “internet of things” (sensors and web connectivity in everyday objects).5 People can increasingly “integrate data from diverse aspects of life—financial, medical, home automation—and control what to share with whom,” the web’s creator, Tim Berners-Lee, has said. And they can decide whether that sharing necessitates real world partners, such as their doctor.
Much attention has been paid to the emergence of “e-patients.”6 As significant, however, are efforts by private and government organisations bearing financial risk for medical costs. These efforts can be relatively rudimentary: the NHS, for example, provides an online repository of vetted diagnostic and health management apps. But organisations can also play an important part in proactively engaging vulnerable populations, who otherwise risk being left out of patient driven initiatives.
Consider a vendor placing biometric sensors in the home of an older person wishing to “age in place.” The sensors transmit information to a computer centre, where algorithms flag potential problems—for example, a change in night time toilet habits could mean a possible urinary tract infection. When an alert is triggered, a clinician from the company (not the family doctor) reaches out to the person. This collaboration to preserve health may involve just the family and vendor. But it could also involve another party with its own interest in that person’s wellbeing—for example, a US retirement community7 or an Italian municipal government.8
Beyond technology’s glitter
Finally, the collaborative health umbrella covers activities that may have little or no consumer e-health element. Chronic disease is implicated in 60% of all deaths globally,9 prompting more intense attention to the socioeconomic conditions that affect health. The result has been an upsurge in interventions by organisations that bear financial risk for medical costs. Their purview has expanded both to areas once thought to be reserved for clinicians, such as drug adherence, and to the work of social service organisations.
In the US, for example, some health plans have been helping members with food, shelter, and even finding a job. The motivation may be less Matthew 25:36 (“I was naked and you clothed me, I was sick and you looked after me”) than mammon (lower medical costs). Yet whatever moral message this may send, sick people are being looked after (particularly if they’re at risk of getting expensively sicker) in collaborations outside the traditional clinical and public health infrastructure.
Cops and docs
Analogous trends in crime prevention reflect the influence of the same larger societal forces driving collaborative health. In the US, UK, and elsewhere, data driven analytics and decision making are being used to prevent crime in much the same way those strategies are being used to prevent acute illness. Interventions with a healthcare counterpart include “hot spotting” (timely identification of extreme patterns in data), home visits, and focusing on frequent users.10 Some crime prevention and healthcare strategies even engage the same groups, such as churches, and, for both, their collaborations may at times exclude the professionals who have historically served as the public face—that is, the police officer or family doctor.
To be clear: prevention has limits. We’ll always need cops to catch bad guys and medical professionals to minister to those coping with what Susan Sontag famously called the “night side of life” in the “kingdom of the sick.” All of us are vulnerable, and the core values of competence and compassion for people in need remain unchanged.
What the collaborative health concept provides, however, is a framework for understanding how the traditional and non-traditional will coexist and interact in a healthcare ecosystem with new players and relationships. Pieces are already in place: the Australian Coles supermarket chain collecting health and fitness data; a US wellness firm combining genomic, clinical, lifestyle, and behavioural data with predictive analytics and health coaching11; the German Agency for Self Help Friendliness aiding hospitals in collaborating with patient groups formed by the chronically ill.12 All these take place alongside doctors treating heart attacks, trauma, and children with earaches, and “digital natives” dabbling at home in “do-it-yourself” health.13
Control issues
These emerging collaborations promise better health, better healthcare, and more individual autonomy. Already, interactive and personalised web technologies are empowering “citizens” (the European Commission’s word) “to manage their own health” and “contribute to modern, efficient, and sustainable [national] health systems.”14 Although the process of biomedical actors becoming more active in tackling social problems15 is often seen as medicalisation, that characterisation only partially fits here. Not only are many of these non-traditional actors not biomedical, the unifying principle underlying collaborative health is a fervent desire by both individuals and organisations to have fewer medical interventions. Rather than creating illness for professional privilege16 or profit, collaborative health could as easily be termed demedicalisation.17
The real potential of collaborative health, however, is accompanied by equally real dangers. Wealth and power still command an outsized vote. Control of patient data has been dubbed “the new money,”18 and global corporations and entrepreneurs are in hot pursuit. Today’s incentives for collaborations may become tomorrow’s coercion. Digital datasets may be used to “manipulate, coerce, surveil, target, and manage people,” as well as perpetuate “existing social injustices and disadvantages.”19
In other words, while collaborative health provides an important framework for understanding and responding to disruptive changes under way, how we as a society shape those changes remains crucial. Particularly critical is the professional response. Three core principles of explicitly and voluntarily sharing power—in the forms of information, engagement, and accountability—should guide medical practice in this new environment (box).
Three core principles
Shared information
Opening the complete electronic health record for patients to read, comment on, and share improves their ability to manage their health.20 Moreover, by making the sharing of information the default, the profession sweeps away a critical information asymmetry and gives itself the moral standing to demand that corporations and governments practise similar transparency with the “big data” they collect. That’s imperative at a time when half of consumers are willing to share their health data with Apple, Samsung, Microsoft, or Google.21 At the same time, the profession will have to become much better at communicating information clearly.
Shared engagement
Collaborative health is multidirectional and multidimensional. For example, a paediatrician related how parents of a baby with a rare condition referred him to a Facebook group where families exchanged stories. What he learnt there shaped the eventual clinical decision.22
Collaboration also means accommodating varying engagement preferences. Elsewhere,23 I’ve suggested that clinicians adopt Quill and Brody’s enhanced autonomy approach, which encourages active exchange of ideas and the explicit negotiation of differences “in an intense collaboration between patient and physician.”24 This flexibility fits those who may want or need the doctor to guide prevention or care, those in the do-it-yourself health movement, those who prefer shared decision making, and those whose preferences may shift because of illness or a new life situation. It’s also a model that sometimes allows one partner to say, “I want you to decide.”
Shared accountability
Shared accountability may pose the greatest challenge. Hierarchies have clear lines; shared power is more complex, particularly among diverse individuals and organisations. For example, a device company offers consumers a diabetes management app developed with an artificial intelligence company.25 Who is accountable for that individual’s health, and what role does the doctor play?
Important questions related to ethical and legal responsibilities for care continuity, communication, privacy, and security remain. However, adopting an explicit collaborative health framework that acknowledges the presence and power of traditional and non-traditional actors—not just “providers” and “patients”—allows and encourages the raising of these kinds of questions.
What connects these strategies is the physician and ethicist Jay Katz’s radical alternative to the traditional “caring custody.” Offered nearly 35 years ago, it still resonates: surrender “the idea of physicians’ Aesculapian authority over patients” and replace it with mutual trust.26
Greener pastures, not higher fences
An aphorism popular in some sections of the US system goes this way: “Greener pastures, not higher fences.” It suggests that doctors should embrace, not resist, the changes needed to make their practices more attractive to patients and to maintain their trust.
Are physicians willing to create a “greener pasture” of true collaboration in diverse wellness and sickness relationships? Will they accept sometimes being cut out entirely until we call upon them? If so, nine out of 10 of us want our doctor as a partner.27 Or will doctors seek to maintain the high fences of professional privilege, resisting revolution and holding ever tighter to incrementalism?
In the information age, “the magic, mystery, and power of the profession may be somewhat diminished,” one informatics pioneer observed, but the opportunity to “bolster the cognitive and moral pillars” of professional identity will grow.28 Mutual trust is the foundation upon which those pillars must rest. Taking concrete actions to implement shared information, engagement, and accountability are critical to building that foundation. The Quill and Brody model, as well as the collaborative deliberation model suggested by Elwyn and colleagues,29 are good places to start.
Though the role of the doctor is in flux, there remains great value in professional expertise rooted in ethical and legal traditions.30 As economic, technological, and social changes give rise to new networks of collaborations, we the citizenry (your sometime patients) need you at our side, both for our sake and to counteract others’ economic or political agendas. Accepting a less central role may feel at first as if collaborative health is shrinking the profession’s importance. In reality, accepting true partnership will profoundly expand the profession’s influence in the days to come.
Footnotes
I would like to thank the Robert Wood Johnson Foundation for its support of this research through a Pioneer grant.
I would like to thank Glyn Elwyn, professor and senior scientist at the Dartmouth Center for Health Care Delivery Science, for his review and suggestions, and Andrea Bradford for her editorial assistance.
Provenance and peer review: Commissioned; externally peer reviewed.
Competing interests: I have read and understood BMJ’s policy on declaration of interests and have no relevant interests to declare.