NEW UPDATE: Thanks for making 2014 a success! Mark your calendars for the 5th Annual Consumer Health IT Summit October 1, 2015 (details to come).

We hope you are planning on joining us throughout the day on Monday, September 15, 2014, when we will kick off National Health IT Week (#NHITWeek) with our 4th Annual Consumer Health IT Summit External Links Disclaimer(#BlueButton).

This Summit has become one of ONC’s hallmark events, which comes as no surprise given the messages I have heard from consumers and consumer advocates since becoming National Coordinator this year. I have heard loud and clear that consumers expect that they will not only control their data but have the chance to actively participate in the health IT ecosystem—and I agree with them that it is time.

At this year’s Summit, we will celebrate advancements made in how digital health has helped consumers become more active partners in their health and health care, and will dig deeper into some of the ways that engaged consumers are helping to transform our nation’s health care system. We will also hear about innovative programs that successfully advance patient centered outcomes through the sharing of information between patients and their providers.

Health IT and engaged patients

The amount of information and data available to consumers is increasing, thanks in part to the meaningful use program and the expansion of the Blue Button Initiative. We owe it to consumers to make this data available and accessible when they want it.

ONC is deeply committed to advancing this notion, taking into account the privacy and security of health information. One of the guiding principles in our interoperability work is that individuals’ health information should be easily accessible to them and their care teams. We recognize that the lack of interoperable health IT systems today results in gaps in health information being available when and where it is needed. And that many times the burden falls on the patient or caregiver to address these gaps and missed hand offs, resulting in extra work, and an unnecessary inconvenience for consumers. This is one of the many reasons why we have made interoperability our top priority — for consumers.

An interoperable health IT ecosystem that has the person at the center must leverage information beyond what is in an electronic health record, and must consider important data generated by patients, information from medical devices and trackers, social and human service agencies, genomic data and other information. We will continue to work to develop standards, certification criteria, and privacy and security protections that foster greater access and use of health data.

Consumers are already managing many aspects of their lives digitally, and they increasingly expect the same capability for their health and health information. We will release new data at the Summit which found the following: Almost 7 in 10 people nationwide perceive online access to their medical information as very or somewhat important. Patients are interested in monitoring their own health and want to share information with caregivers and providers to support their health and health care. Among individuals who accessed their online record, over 4 in 10 shared their health record with others, including their health care provider. Throughout the Summit we will look for ways that we can best meet some of these demands.

From SOAP to Open Notes

These demands are not abstract to me. In my former life in academics, I studied the power of patient generated health data and have, throughout my career, understood and believed in the power of the consumer voice in their health.

I think of this each time I am in clinic, documenting my visits with patients, as I will be this weekend. I will be using a version of the “SOAP” note—Subjective, Objective, Assessment, and Plan. The SOAP was a bold and important early form of standard data capture for health information. As my colleagues in medicine know, doctors have, for decades, been taught that information from the patient should go in the “subjective” component.  Many physicians, including myself, appreciate that the clinical note should be a partnership with patients, the convention of the SOAP speaks to what some patients experience in the care system. They do not always feel that they are empowered and engaged and part of bi-directional information at the level they desire.

Since its adoption, the world has evolved dramatically, making it increasingly possible for information from patients about their health no longer just subjective. It is and can be objective, whether through submission of quantified data (like blood pressure) or functional status. And, as projects like Open Notes External Links Disclaimer demonstrate,  patients can and should also be closely involved in the assessment and plan sections of the SOAP note. We must, as a nation, think about how we can more aggressively welcome consumers in these other sections of the note, and decision-making, as it has significant implications for their health. It is important and it matters.

Join the conversation online

I look forward to learning and hearing from consumers and stakeholders throughout the course of the day and continuing our work together to realize the goals of an interoperable, patient-centered, health IT ecosystem.

I strongly encourage you to plan on joining us External Links Disclaimer either in person or online on Monday the 15th to explore how many of our colleagues across the country are working hard to ensure that consumers have easy, electronic access to their health information.

Share with us your thoughts, reactions and questions by following us on Twitter @ONC_HealthIT and tweeting your questions using #BlueButton.  See you on September 15th.

4 Comments

  1. Lincoln Weed says:

    Dr. DeSalvo recognizes that the SOAP note “was a bold and important early form of standard data capture for health information.” Readers may be interested to know that SOAP notes are part of a unified set of standards and tools and processes based on re-conceiving medical practice as a scientific discipline. This re-conception of medical practice is the subject of a 2011 book by Dr. Lawrence L. Weed (LLW), the originator of SOAP notes, problem lists, the problem-oriented medical record, “knowledge coupling” tools, and new concepts of medical education.

    The book, entitled Medicine in Denial, www.createspace.com/3508751, argues that scientifically rigorous medical practice depends on active, informed patient involvement. That role for patients has been central to LLW’s thinking since his first book in 45 years ago, where he wrote: “”patients are the largest untapped resource in medical care today.” This is especially true for “the patient with a chronic disease [who] must in large part be his own physician.” Medical Records, Medical Education and Patient Care (1969), pp. 46, 48.

    Medicine in Denial addresses this subject in a manner that is still ahead of its time. Among other things, the book shows how the right standards and tools and processes make possible a rational division of labor among external tools, medical practitioners of all kinds (not just physicians), and patients themselves. Current concepts of interoperable IT, meaningful use and patient-generated health data do not come close to what is required.

    Readers who want to learn more can see the able of contents, overview and introduction to Medicine in Denial at http://www.thepermanentejournal.org/files/MedicineInDenial.pdf. Some of the book’s core concepts are discussed in a January 2014 article, “Diagnosing diagnostic failure,” at http://www.degruyter.com/view/j/dx.2014.1.issue-1/dx-2013-0020/dx-2013-0020.xml?format=INT. Also relevant are LLW’s comments on the Stage 2 meaningful use regulations at http://www.regulations.gov/#%21documentDetail;D=HHS-OS-2012-0004-0441, and his comments on the PCAST report at http://www.regulations.gov/#%21documentDetail;D=HHS-OS-2010-0030-0099. Of special interest are a series of thoughtful blog posts by Dr. Leslie Kernisan, the last of which is http://thehealthcareblog.com/blog/2013/05/22/medicine-in-denial-what-larry-weed-can-teach-us-about-patient-empowerment/. See also her post http://thehealthcareblog.com/blog/2013/09/12/patient-engagement-on-metrics-and-meaning/. All of this confirms Dr. DeSalvo’s point that “patients can and should also be closely involved in the assessment and plan sections of the SOAP note.”

    Disclosure: LLW is my father, and I am co-author of Medicine in Denial and the cited article and comments.

  2. Birendra Chowdhury says:

    Many physicians, including myself, appreciate that the clinical note should be a partnership with patients. The test of quality and are well known and widely utilized by the athletes steroids online all over the world.

  3. J Bollen says:

    Karen – Calling an event a “consumer health IT summit” and asking consumers to donate their time and resources and spread the word via social media while only including one actual consumer voice on the panel shows a failure to understand the core value of patient centered care and change management and the power of social media.

    Designing for and with patients requires having them at the table at every point in the process. People look at every single channel you use to communicate and failing to walk the talk shows a true lack of consistency in your “brand” to include patients in health IT.

    Social media can be a powerful agent for change but having a consumer event without consumer representation and hiring a “director of consumer engagement” who lacks any background in HealthIT and patient engagement is not the direction we would expect from ONC.

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