Setting the Future of Healthcare: Where’s the Person?

Submitted by Vaughhan Glover on Mon, 05/28/2012 – 01:51

Success starts with accurately defining ‘People-Centred’

There is little doubt in the minds of informed health stakeholders that healthcare and the systems which support it must change. Budget limitations, aging populations, the attendant explosion of chronic diseases, availability of provider and service options on a global basis – all triangulating within a system designed to treat illness and symptoms – now converge toward a massive ‘tipping point.’ Paul Wallace, former medical director for health and productivity management programs at Kaiser Permanente Federation, summarized it best in 2005: Prior to 1500, ‘The only person who had the book was the professor’; with the arrival of the printing press, ‘The medical students finally had the book’; 500 years later, ‘Now, the patient has the book’.1 We are in the greatest paradigm shift of health information and power in the history of humankind – that being the shift from the provider to the people.

Yet after studying and practicing people-centred healthcare for more than 30 years, which included writing a book clearly defining a people-centred vision, and after fifteen years developing the Canadian Association for People-Centred Health (CAPCH) as a national voice for healthcare reform, the most consistent error I see is the failure of all stakeholders to understand what a people-centred system actually is and how it works.

Too often ‘people-centred’ is a term used for its political popularity, with a vague idea that it means increasing your courtesy towards patients or doing more surveys for patient satisfaction. Meanwhile Canadians now find themselves with healthcare delivery organizations (HDOs) that execute based on a model aimed at treating illness, or simply “fixing things.

Institutionally centred care fails to recognize that the most important factor in the state of a person’s health is the person him/herself and the relationships they maintain. By way of example: unless I choose to schedule an appointment to visit my family physician, my physician can’t contribute to my wellness. It is me who controls my physician’s ability to provide guidance to my wellness, and it is me who chooses to adhere to (or ignore) my physician’s advice.

Through daily exercise, food, work, play and sleep decisions, we are constantly the de facto managers of our individualized personal healthcare systems. The participants we invite into our lives collaborate in our behaviour and wellness choices; such “allies” include spouses, friends, fitness instructors, dentists, massage therapists, weight-loss coaches, chiropractors, psychotherapists – the list is endless, and to a great extent, outside the control of the HDO. My GP may tell me to watch my carbohydrate intake to manage my diabetes, but if my wife makes pasta for dinner and my fitness instructor recommends an energy bar, my wellness could suffer according to whose advice I choose to follow.

People-centred care builds around the reality that my larger healthcare system is already my community – the network of individuals and organizations through which I define my lifestyle and my wellness journey. By contrast, many HDOs implement strategies which try to ‘lock’ the person into their monolithic silos of care via portals, individual electronic health records (EHRs), and networks. This is a well-intended but half-baked approach, and is bound to fail because no one organization can offer everything a person needs for a life.

I tend to avoid the word ‘patient’ since it sets up an us-and-them scenario. ‘People-centred’ describes a paradigm in which the informed person and their network allies determine the level and type of wellness care sought and received. Ultimately the goal of people-centred care is to enable proactive partnership.

Its value lies in the fact that not only does the demonstrated cost of illness care fall, which it does, but population health and well-being also increase, and in the long run, total system costs fall.

For HDOs to embrace a People-Centred paradigm shift and remain relevant to those using their services, it becomes clear we need a framework through which all stakeholders in the extended wellness ecosystem are able to connect and communicate with a patient. This requires modifications to the way our caregivers are compensated (e.g. outcomes-based remuneration models), but it also requires the establishment of infrastructure that enables people to create and control their own ecosystem of personal wellness contributors, allowing for the sharing of information and knowledge across and around this ecosystem.

Having defined the model and our need for it, CAPCH has begun working with NexJ Systems to develop a cloud-based software system that would allow patients to do just that: identify and control a network of family, friends and healthcare professionals who would be allowed to interact with the health and wellness of the patient. As we worked on this system, the real power of technology began to reveal itself. Not only does the patient identify and control who will be a part of their trusted network (much like Facebook), they can also identify and control what role each person plays and what access to information each might have. The system enables and builds a facilitating network on which health and wellness services, products, and integrated apps can be delivered, helping each user become all they are capable of being.

This platform is more than a shared Personal Health Record or an interoperable EHR; it offers an aggregated view of all of my information – including information contributed by both me and my allies. Contribution to this shared record is controlled by me, the patient. Naturally my GP provides information, but so can my pharmacist, my fitness instructor, my diabetic nurse, and so on.

The platform also delivers integrated applications which enable wellness and prevent costly complications of chronic conditions. These integrated apps – continually being developed through CAPCH in collaboratives with leading research institutions – not only share information between them, but can also exploit health data from existing HDO systems (e.g. hospital or MD office EMRs) to the benefit of me and my network by providing valuable feedback and guidance.

For example: my blood glucose level, entered by me, is not only made available to my GP and my diabetes nurse, but can be improved or maintained by an application that produces menu suggestions for my next meal. My wife or I will be able to check this when deciding what we should have for dinner. Enter it once, and exploit it across the network.
Perhaps best of all, my GP cannot only see my blood glucose level collected in real-time via my Bluetooth-enabled monitor, but can also see what my fitness trainer has me doing, check my daily weigh-ins, and then proactively intervene to adjust my insulin level – long before I feel the need to schedule an appointment. Exciting news for even the most techno-illiterate of us. But when the alternative is a slump in wellness, this is the kind of platform I want as a person.

And so we’ve arrived at People/Person-centred Health Care.
While progress toward people-centred ideas is heartening, in practice, it too often means adoption of a poorly defined term rather than actual understanding of the complete reform needed for the ideas to work effectively. Unless governments and providers acknowledge today’s modern, web-empowered person and embrace genuine people-centredness, their ‘reforms’ risk further segregating those who seek to serve us and will remain little more than minor tinkering round the edges of a system in decline.

True levels of change demand the leveraging of technological and systemic innovation to extend wellness and chronic care to the patient, families, and communities, while assisting excellence in chronic and acute care. Reform also means embracing a system model in which the person – supported by skilled and credentialed professionals – drives their own healthcare decisions alongside their trusted network of confidantes. In our years of commitment to People-Centred healthcare reform, CAPCH has consistently observed that technological innovation can light our way to a fiscally sustainable, truly People-Centred healthcare model; we just need to embrace it.

1 Paul Wallace, conference lecture. Wallace is a U.S. board certified physician in internal medicine and hematology and a renowned lecturer on topics relating to Comparative Effectiveness Research, including evidence based medicine practice and policy, population-based care and disease management, and new technology assessment. He is involved in thought leadership at the national level, including roles  on advisory committees at the Institute of Medicine (IOM) Board on Population Health and Public Health Practice; the Committee for Systematic Reviews of Clinical Effectiveness Research; and Coordinating Committee for Developing Trustworthy Clinical Practice Guidelines.  He sits on the board of directors for AcademyHealth and the Society for Participatory Medicine, and on the steering committee for the Center for Management of Complex Chronic Care at the Veterans Administration in Chicago.

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