Person @ Center: Envisioning the Health IT-Enabled Future of Health from the Person’s Perspective

When I started at ONC nearly a decade ago, there was a lot of talk about “patient-centered care” and how health IT supports this view.  Most of the comments I heard throughout the health care and health IT space were about having the health care provider obtain a more complete view of the patient.  I was struck by the “provider-centric” thinking around patient care. 

A few of us at ONC started pushing to broaden this thinking.  We helped develop a consumer e-health program that would help to focus efforts to improve patient access to their own health data held by providers and others, an important step in patient empowerment. We also saw a need and an opportunity to consider how other information and tools could impact patients’ health, health care, and the role of individuals and caregivers in both. Since then, ONC and other organizations have come a long way in supporting consumer engagement in health. But a lot of work remains.

A little over a year ago, we embarked on an effort to look to a long term future, where health IT and communications technology could support people in managing their own health and partnering in their health care. We engaged visionaries and subject matter experts to help us develop a policy framework for putting the person more at the center of their own health and health care, enabled by health IT.  We wanted to set aspirational goals and some milestones along the way so that federal and private actors can all move toward the same end.

As we continue to work on this effort, we want to put forward some of these ideas for additional input.  We recently posted a Person @ Center Issue Brief and a web page, which share some of the themes we heard from experts and stakeholders.

This is the first of a series of blogs on this topic.  We’d like to keep the dialogue going   and look forward to hearing your feedback as we think about some of the policy challenges and opportunities.  Please comment on this blog if you feel so inclined.

Special thanks to MaryJo Deering and Michelle Murray for their ideas, hard work, and dedication to the development of this vision and its supporting core values and goals. I’d also like to acknowledge the support of Lygeia Ricciardi and Erin Poetter Siminerio from ONC’s consumer eHealth team.

 

3 Comments

  1. Stephen Wilkins, MPH says:

    Jodi,

    I applaud ONC’s move to get the patient more “engaged” in their health care. I also acknowledge the role of supportive role that a well executed HIT strategy can play in engaging people in their care…and making it an enjoyable experience.

    As a researcher and author in the patient engagement and physician-patient communication space, I must point out that the key to patient engagement is a strong physician-patient relationship, characterized by good patient-centered communications between clinician and patient. Absent such a relationship even the best HIT promotional campaign will fail.

    As I say in my blog…patient engagement is a physician-patient relationship challenge…not and HIT challenge. There’s no “app” for patient engagement absent a strong patient-centered doctor-patient relationship.

    Steve Wilkisn, MPH
    Mind the Gap

  2. Scott Brown says:

    Thanks so much to Jodi, Lygeia, Erin, and the rest of the ONC team for your efforts! As you know, all of us at MyDirectives support your work and are sincerely grateful for your support and encouragement over the past few years. We, too, dream of a day where the consumer is truly at the center of his or her healthcare throughout all the stages of life, even if/when there is an emergency and he or she is unable to communicate with caregivers and healthcare providers. We hope that you’ll continue to talk to all stakeholders and stress the importance of having the consumer/patient’s well-thought-out wishes for treatment available, known and followed. We look forward to our continued work together to make this a reality!

  3. David Lawton, RN PhD says:

    Jodi,
    Since retiring from ONC and federal service I have had the opportunity to more closely look at the consumer engagement issue. As you know I have always been a consumer advocate and supported Lygeia and others to engage consumers. Our process was to make sure consumers had a voice in the national forum through representation on committee structure, open forums and meetings. While that is good, I believe there are perspectives I could not see.
    First, consumers don’t want all their medical records. They want access to them if needed to change providers or research their disease and to that end, the work that ONC has done is extremely valuable but they don’t need all the information for their day to day health improvement. Secondly, they want and need very little information. They need to know what they are working on or monitoring as a consumer of health care, like routine labs, (A1c, lipids, and a few others). They need to know and have tools they can use to track their efforts to improve their health. Weight, diet and exercise are most prevalent. What is lacking in a true “consumer” relationship is accurate and timely cost estimates for health care services before they agree to them.
    Consumers are smarter than given credit for. I think professionals and consumers can use technology and solve the engagement issue if health care costs are factored into the consumer data mix. We might just also see a reduction in health care expenditures. I am anxious to hear what others have to say.
    Thanks,
    David

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