Person-Centered Healthcare and the Limitations of Government

As I’m on the lunch break from a workshop of the ONC’s Person at the Center Initiative, for which I am on the advisory board, I am contemplating how we make our health and healthcare truly person-centered, but also the levers government has in promoting this critical transformation. But more importantly, the limitations to what government can do this area.

For those already well-versed in HITECH and the ONC’s agenda, you can just scan the next couple of paragraphs.

Putting I in Health IT Croppped

The US Office of the National Coordinator for Health IT, as most readers know, is an office of the US Department of Health and Human Services that is

“… at the forefront of the administration’s health IT efforts and is a resource to the entire health system to support the adoption of health information technology and the promotion of nationwide health information exchange to improve health care…

ONC is the principal federal entity charged with coordination of nationwide efforts to implement and use the most advanced health information technology and the electronic exchange of health information. The position of National Coordinator was created in 2004, through an Executive Order, and legislatively mandated in the Health Information Technology for Economic and Clinical Health Act (HITECH Act) of 2009.”

Fundamentally, this translates to facilitating and encouraging the adoption of information technology at the point-of-care (electronic health records with clinical decision support) and health information exchange. But–to their great credit–ONC recognized that patients/consumers/caregivers are the most important stakeholders in this transformation, and they created the Office of Consumer e-Health, headed by Lygeia Ricciardi. One of the coolest things to come out of this office is a brief video, envisioning what health care will look like in a future in which we use EHR, patient access to records, and health information exchange. (A much preferable vision to these, although some may argue the latter are more reflective of reality on the ground.)

One of this office’s programs is called Person at the Center. From their website:

“By 2020, ONC envisions that:

The power of each individual is unleashed to be active
in managing their health and partnering in their health care,
enabled by information and technology.

Core Values

The proposed vision is underpinned by several core values centered on the person:

  • Individual self-determination and the public good are both optimized.
  • People can decide whether and how much to participate in managing their health and health care.
  • People can access wellness and health care services enabled by technology that reflects their individual needs, values, and choices.
  • Health care is a partnership between the patient, their caregivers, the care team, and supporting services.
  • Information is shared, as appropriate, between the individual and all their care partners to enable informed, participatory decision-making as desired by the individual.
  • Everyone who holds information about an individual exercises responsible information stewardship.
  • Easily used and useful, trusted tools are available to support the person’s decision-making.”

A team from Westat, working under contract from ONC, created a white paper out of this work, and it’s good reading if you haven’t read it.

Can Government Make This Happen?

With that as a backdrop, what can or should government do to to promote this kind of healthcare transformation?

Jodi Daniel, the attorney and director of the office of planning and policy for ONC, along with Lygeia, cites these levers:

  • Policy
  • Regulation
  • Convening
  • Coordination

They also discuss how the ONC provides an important bully pulpit, through which they influence change.

Some point out that, in the end, only money motivates widespread behavior change. ONC has this covered because the HITECH act provides for financial incentives and disincentives for the adoptions of health IT, as discussed below.

I would add to this that providing resources is also useful, such as information resources (like MedlinePlus and Healthfinder), literature search (PubMed), and videos to explain difficult concepts and provide testimonials (see above).

Through their efforts, ONC has been successful in achieving their goal of encouraging physicians and hospitals to adopt electronic health records and electronic order entry. (Some have complained that the current policies discourage innovative approaches of small companies in favor of conservative EHRs of entrenched companies, but this may be more a function of creating practical, implementable policy more than anything else.) But ONC has been less successful in creating sustainable and universal health information exchange, due to the business and technical complexities involved.

What is very exciting is ONC’s emphasis on patient engagement policies through stages 2 and 3 of Meaningful Use (MU). These changes will encourage providers to exchanging e-messaging with patients, ensure that patients have the ability to view, download, and transmit their health record information, and, in Stage 3, to collaborate with patients and caregivers in developing shared care plans.

Can MU 2+ Succeed?

Are these goals achievable? We must first overcome several obstacles. Chief among them are doctors.

Many doctors complain that the Meaningful Use regulations are too demanding, and even though the requirements are phased in (initially in the form of incentives and later progressive penalties), some docs say this is all too much too soon, that the technology isn’t good enough, it slows them down, and it’s too expensive. Even though there are financial incentives, the net benefit does not offset the sum of system expense plus negative workflow impact. (This ignores the fact that, when implemented wisely and well, we can expect higher quality care as a result of using an EHR, but those benefits accrue to patients and not to physicians, who are still largely paid for quantity care rather than quality care.)

And this is just the Stage 1 regulations. Stage 2+ expects certain behaviors on the part of their patients, which physicians deem largely out of their control. This is prompting physicians to do one of three things:

  1. Retire,
  2. Drop out of the program and suffer the financial consequences, or
  3. Continue to try to achieve meaningful use

While those in this third group will do what we are hoping they’ll do, others will find ways to achieve the letter, but not the spirit, of the regulations, particularly when it comes to patient engagement.

Already I am hearing about technology solutions that communicate electronically with patients on behalf of the physicians, so that physicians are relieved of this “burden.” I am also seeing EHRs generate visit summaries, which are an MU requirement, that are virtually content-free—this is particularly true when visit documentation takes place after the patient leaves the office.

These workarounds are, of course, deplorable. On the other hand, many physicians, especially in smaller primary care practices, are struggling financially. On top of this, most busy practices are managing entropy on a daily basis, so additional perturbations could be financially and professionally disastrous.

I suspect that, given the tremendous opposition to some of the MU rules, ONC may eventually need to delay and/or dilute some of the requirements.

But overall, we must remember that their track record for technology adoption has been good.

Why Person-Centered Healthcare is Different

The ONC’s policy and regulatory agenda is necessary, but not sufficient, to transform our healthcare system into one that is more person-centered. This is because the changes needed are not just technological but cultural. Culture can’t be changed through government edict.

Certainly, policy and regulation can create the environment that makes cultural change possible, but ultimately it’s people that create culture, and people that often resist cultural change.

To change culture we must change the behavior and mindset of the key stakeholders, which in healthcare means the patients (including families and caregivers) and providers (especially physicians). This is the reason we created the Society for Participatory Medicine—to change the culture from both sides:


  • To guide patients and caregivers to be actively engaged in their health and health care experiences.
  • To guide health professional practices where patient experience and contribution is an integral goal of excellence.
  • To encourage mutual collaboration among patients, health professionals, caregivers and others allowing them to partner in determining care.

To that end, I applaud the ONC’s efforts to not just use policy and regulation, but also to spark conversations among stakeholders and thought leaders about these issues, and to publish the output of these conversations to seed additional discussion and raise awareness.

At that point, it’s up to people.

Organizations like the Society for Participatory Medicine, health professions educators, patient advocates, health professionals, health coaches, primary and secondary school teachers, and many others will need to slowly change culture by spreading ideas. Only by educating both patients and providers can we create a health care system in which patients and providers are collaborators in the patient’s health, all participants are expected to contribute to the collaboration, and each party respects the contributions the other brings to the partnership.

Along the way, there will be people, both patients and providers, who don’t want to change. For those, we need a strategy to help them. More on this in a future post.

So the ONC and its various initiatives are on the right track, but in the end it’s not about the technology, it’s about culture. And government can only go so far in changing culture.

6 thoughts on “Person-Centered Healthcare and the Limitations of Government

  1. > Government can only go so far in changing culture

    You’ve accomplished more than a little change in your career, and if I understand correctly you’ve also hit some brick walls. What’s your advice on the culture issue? Clearly you haven’t decided to give up. 🙂

    1. Great question. First, one must understand the culture in order to change it. Then changing it involves changing hearts and minds, which can’t be done by edict. Listening, having conversations, providing education, and engaging key opinion leaders are all strategies that are helpful. But there is no silver bullet.

      One interesting strategy is to use social networks (real ones, not the online kinds) to drive behavior. Nick Christakis co-founded Activate Networks to do just this.

      1. What do we know about how to identify the influencers in those networks? The site says it’s not the usual “KOL” (key opinion leaders).

        Sounds like a useful aspect to think about. As Let Patients Help says, “Information alone doesn’t change behavior.”

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