Supporting “personalized health care”

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§1. The potential role of health IT

Decisions about diagnosis, treatment or prevention should reflect a person’s values and preferences, and should begin with the person as a key member of the care team.

Personalized health care (also called “personalized medicine” or “precision heath care”) involves information about the individual’s physical condition and genetic background. But it also requires information about the individual’s environment and community, health-related behaviors, culture and values, family history, prior response to treatment, levels of health knowledge and engagement, and proximity to a treatment center.

Health IT can support personalized health care in many ways. For example, EHRs can be configured to:

  1. accept PGHD (See Patient-generated health data);
  2. identify candidates for clinical trials and other research; and/or
  3. prompt consumers to enter missing information or confirm their record’s accuracy (such as medication lists, allergies, family history).

Health IT can also prompt members of the care team to provide consumers or caregivers with educational materials that help them manage health outside the office setting, or learn more about a condition, a diagnosis, or care options.

  • How can health IT best support the adoption of shared-care plans that are (i) fully accessible by consumers and providers; (ii) reflect personal preferences and values; and (iii) promote joint participation in and responsibility for health choices?
  • What federal policies would guide the development and use of health IT in a way that supports the adoption of shared care plans?

§2. Privacy & security

ONC recognizes that privacy and security concerns may impact the willingness of consumers and providers to use health IT to increase access to health information. Privacy and security are the topic of a separate section of the Strategic Plan (Goal 3), since these concerns cut across all areas of health IT. Although this public comment period is not targeted at updating Goal 3, ONC will be revising that section of the Plan and your discussion of these concerns, and ideas about addressing them, will help the federal government decide on appropriate future steps.

(You can read the current version of Goal 3 by clicking the Background Documents tab at the top of this page, and selecting 2011-2015 Federal Health IT Strategic Plan).

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March 31, 2013 1:37 pm

In my opinion, to support personalized medicine, two approaches are required:
1) Full integration of commercial mHealth solutions into EHRs and clinical software. In this way, the PGHD can be also incorporated seamlessly. I believe that cool mHealth solutions that resemble aplications such as Runkeeper can make obeying the care plans fun and new and trendy lifestyle that both the patient and doctor agree on.
2) The structure of data captured in EHRs must be also adapted to support personlized medicine – personal genomics and better identification of candidates for clinical trials. It is described in this book but it seams that not many clinical softwares adopted this approach.

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    April 1, 2013 8:17 am

    Welcome to Planning Room, and thank you for your comment, icarewave. You can read more about ONC’s approach in using health IT to enable research here.

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April 1, 2013 9:11 am

The platforms have to be standardized to allow for consumers and various providers to easily enter and extract data – or shared-care plans fall apart. The permissions piece is key. Consumers need to be educated on who (providers/payors/caregivers) can see what (health data). This is especially important in the areas of behavioral health.

Data entry on the consumer side should be simple, simple, simple and driven from mobile apps . This should include the ability to scan a Rx by snapping a picture from the phone, etc. etc.

There are so many vendors doing all of this – the question is really one of subtraction at this point. I like the idea of Blue Button being the common denominator (platform) that developers and consumers can work with.

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April 25, 2013 3:24 pm

Person centric profiles, maintained and updated by consumers, can support personalized preference sensitive care for the individual, and mass customization of care for cohorts or groups. The same profile data can also support outcomes analytics for us to learn, learning health system, on what are unique combinations of profile characteristics that support improved adherence and outcomes, as well as unlocking the engagement puzzle. mobile health apps that support F2F and virtual visits off much promise here.

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    April 25, 2013 5:13 pm

    Thanks for your comment susanchull. What can the federal government do to support the development and adoption of person-centric profiles maintained and updated by the consumer?

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May 1, 2013 3:37 pm

I would worry about the government becoming too involved and/or too prescriptive related to the care planning aspect of this measure. From my perspective, holistic multi-dimensional care planning is still in it’s infancy. This is particularly true as it relates to incorporation into the EMR. I would like to see ONC/CMS first just mandate that there be a multidisciplinary care plan but not provide any specifics as to the nature of the care plan. Let the development occur somewhat organically. Once the frameworks are in place, then additional direction could be provided to refine the process.

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May 1, 2013 8:13 pm

Personalized health care is the ultimate dream to patients. I think, starting from human genome project, and now healthcare reform plus ACA, we are on our way to realize that dream. In late 90’s, human genome project made me realize that we can actually have a complete biological picture of a patient, which opens the possibility to personalize medicine for each individual. I spent several years in leading genomics companies and saw great progress toward the dream, although it would take much longer than everyone originally thought.

Then, the healthcare reform set out to connect patient data from everywhere, creating another historic opportunity to get a complete health picture of each patient. ONC’s health IT strategic plan provides a pretty good direction and framework for building… more »

…the needed infrastructure. The only thing I’d like to add is regarding the implementation. Since we are at the beginning of healthcare transformation, be open-minded because what will get us there at the end may not be the traditional EHR and HIE technologies. You never know what new disruptive technologies will come up surprisingly, which are able to connect patient data much cheaper and faster.

To get a taste of personalized health care sooner, I would suggest government to put some focus along this line:

1. Foster creation of large scale patient engagement platforms, where patient is at the center and control of assembling his/her complete clinical and living data. See my comment to the topic “decreasing disparities through health IT”.

2. Fund more large-scale patient outcome real time research that will lead to creation of real-time patient-centered and data-driven learning health systems. See my comment to the topic “Using health IT to enable research and inform practice”.

3. Experiment with new care delivery model that stacks a learning system (from #2) on top of a patient platform ( from #1). A successful model will be able to generate new knowledge of personalized care and deliver such personalized care to patients at the same time.

Personalized health care has the potential to deliver better care at lower cost to individual patients. I also hope ONC will talk more about it in public campaigns because consumers can relate to it easier than to technical jargons like data interoperability and health information exchange. « less

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(Q#1) Care plans are necessary to provide a roadmap for achieving the best possible outcomes, as defined by both clinical and individual patient goals. Care plans also present a valuable opportunity to collect and synthesize patient-generated data with clinical data across care settings. Ultimately, we are working toward care plans that are interactive, real-time, and operational across settings, as opposed to static documents. ONC can take steps to build the necessary foundation for interactive, flexible, accessible care plans. Care plans should include documentation of a cross-setting care team member list, comprehensive patient goals (not setting specific), and psycho-social assessment information, such as behavioral health needs, living situation, and community-based resources. When… more »

…more than one professional care team member is listed, a notation should be made regarding who serves as the primary contact so that the patient and family member are never without a clear point of contact. We encourage ONC to look at the Shared Care Plan platform currently being used by patients served by the PeaceHealth medical system in Washington, Oregon, and Alaska as a successful example. « less
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May 8, 2013 5:43 pm

How can health IT best support the adoption of shared-care plans that are (i) fully accessible by consumers and providers; (ii) reflect personal preferences and values; and (iii) promote joint participation in and responsibility for health choices?

E-enable care plans will not only enable primary care doctors to communicate in a timelier manner with other health care providers – such has home health agencies – care plans will serve as the central component of patient-centered care. A shared-care plan by definition has to be an agreement between patient and the care provider consisting of what health goals will be attained though treatments and interventions that improve the health and wellbeing of the patient.

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