Enabling Personalized Medicine through Health Information Technology: Advancing the Integration of Information

Enabling Personalized Medicine through Health Information Technology: Advancing the Integration of Information

From the Brookings Institute Executive Summary

With federal officials pursuing the goal of a personal human genome map under $1,000 in five years (White House, 2010), it is possible to envision a future where treatments are tailored to individuals’ genetic structures, prescriptions are analyzed in advance for likely effectiveness, and researchers study clinical data in real-time to learn what works. Implementation of these regimens creates a situation where treatments are better targeted, health systems save money by identifying therapies not likely to be effective for particular people, and researchers have a better understanding of comparative effectiveness (President’s Council of Advisors on Science and Technology, 2010).

Yet despite these benefits, consumer and system-wide gains remain limited by an outmoded policy regime.  Federal regulations were developed years before recent advances in gene sequencing, electronic health records, and information technology.  With scientific innovation running far ahead of public policy, physicians, researchers, and patients are not receiving the full advantage of latest developments.  Current policies should leverage new advances in genomics and personalized medicine in order to individualize diagnosis and treatment.  Similarly, policies creating incentives for the adoption of health information technology should ensure that the invested infrastructure is one that supports new-care paradigms as opposed to automating yesterday’s health care practices.

To determine what needs to be done, a number of key leaders from government, academia, non-profit organizations, and business were interviewed about ways to promote a better use of health information technology to enable personalized medicine.  The interviews focused on policy and operational issues surrounding interoperability, standards, data sharing protocols, privacy, predictive modeling, and rapid learning feedback models.

This paper outlines the challenges of enabling personalized medicine, as well as the policy and operational changes that would facilitate connectivity, integration, reimbursement reform, and analysis of information.   Our health system requires a seamless and rapid flow of digital information, including genomic, clinical outcome, and claims data.  Research derived from clinical care must feed back into assessment in order to advance care quality for consumers.  There currently are discrete data on diagnosis, treatment, medical claims, and health outcomes that exist in parts of the system, but it is hard to determine what works and how treatments differ across subgroups.  Changes in reimbursement practices would better align incentives with effective health care practices……

A related commentary…

A commentary featured in the January 19 issue of The Journal of the American Medical Association (JAMA) from AHRQ Health IT grant recipient, Alex Krist, M.D. calls for the design of a patient-centered health information system that goes beyond the Personal Health Record.  Krist explains that in order for technology to be used, a system should be designed to help patients access health information, interpret data from multiple sources and serve as a tool to facilitate action.  Select to access the abstract.
(For suggestions on how to get this article for free or at low cost, click here)

Related articles

• ‘Digital Divide’ Appears To Exist In Adoption Of Online Personal Health Records

March 28, 2011 4:00:00 PM EDT Share

Despite increasing Internet availability, the ‘digital divide’ (disparities in access to technology) appears to exist among primary care patients adopting an online personal health record, according to a report in the March 28 issue of Archives of Internal Medicine, one of the JAMA/Archives journals. “The personal health record (PHR) is an Internet-based set of tools that allows people to access and coordinate their lifelong health information,” the authors write as background information in the article..

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Health Information Technology Resources from NN/NLM

The National Network of Libraries of Medicine (NN/LM), Greater Midwest Region has a Web page devoted to health information technology resources. It includes links to pdf files of the presentations at the December 2010 meeting – “EHRs and Librarians: A Symposium”.

From the web page

Health information technology (Health IT or HIT) describes the management and secure exchange of health information among consumers, providers, government entities, and insurance agencies. Electronic Health Records (EHRs) are a special focus of HIT. EHR’s can assist in maintaining an accurate picture of a patient’s health and to more securely share information between doctors. Using an EHR can replace paper medical records to maintain your health information.

Electronic Health Records (EHRs) and Personal Health Records (PHRs)

In December 2010, the GMR held a meeting called “EHRs and Librarians: A Symposium” before the fall RAC meeting in December 2010. Below are pdf files of the presentations.

Regional Extension Centers – David Sweet
Summary: Overview about what Regional Extension Centers (RECs) are doing to assist health professionals with implementation of electronic health records; what AHIMA is doing related to RECs, and possible roles for librarians.

Using New Digital Resources to Promote and Understand PHRs – Allison Vance
Summary: Learn about AHIMA’s consumer education campaign, my Personal Health Record (myPHR), and the various digital resources available to librarians interested in assisting patients and community members with learning more about PHRs and larger health literacy issues.

Implementation of a Patient Portal and MedlinePlus Connect in a Low-Income Population – Maxine Rockoff, Ph.D.
Summary: The Institute for Family Health, a network of Federally Qualified Health Centers in Manhattan, the Bronx, and the Mid-Hudson Valley, has had an electronic medical record (EMR) since 2002. In 2008, the Institute implemented the patient portal for its EMR. This talk will present research findings to date from focus groups, a Health IT Readiness Survey, usability studies, a survey of providers & staff, and a statistical analysis of patients who received access codes and those who didn’t. The talk will also describe the process of developing MedlinePlus Connect with the National Library of Medicine, as well as some preliminary information on the classes developed for patients to teach them how to use these tools.

MedlinePlus Connect: Linking Patients to Health Information – Joyce Backus
Summary: Overview and background for developing MedlinePlus Connect, a new service from the National Library of Medicine that allows electronic health records (EHR) systems to link users to information in MedlinePlus. MedlinePlus Connect delivers information about conditions and disorders, health and wellness, and prescription and over-the-counter medications to patients, families, and health care providers when it is needed. MedlinePlus Connect accepts requests for information on diagnoses (problem codes) and medications. For problem codes, MedlinePlus accepts ICD-9-CM and SNOMED CT CORE. For medications, MedlinePlus Connect accepts RXCUIs and NDCs. The API for this service conforms to the HL7 Context-Aware Knowledge Retrieval (Infobutton) Knowledge Request URL-Based Implementation specification.

The GMR has set up a listserv to continue the conversation about EHRs and PHRs. To subscribe to EMR-GMR, send the command SUBSCRIBE EMR-GMR BARACK OBAMA to listserv at uic.edu, replacing “Barack Obama” with your first and last name. Make sure the subject line is left blank.

Links to Health Information Technology Resources are also given

NLM announces MedlinePlus Connect

From a posting by  GMRLIST – email list for the National Network of Libraries of Medicine-Greater Midwest Region (NN/LM-GMR) members. Written by Samanthi Hewakapuge, MA, MLS, Consumer Health Coordinator

Today NLM [US National Libraries of Medicine) announces MedlinePlus Connect (http://medlineplus.gov/connect), a free service that allows electronic health records (EHR) systems to link users to MedlinePlus (http://medlineplus.gov), an authoritative up-to-date health information resource for patients, families and health care providers. MedlinePlus provides information about conditions and disorders, medications, and health and wellness.

MedlinePlus Connect accepts requests for information on diagnoses (problem codes) and medications. NLM mapped MedlinePlus health topics to two standard diagnostic coding systems used in EHRs: ICD-9-CM and SNOMED CT CORE Problem List Subset.

When an EHR submits a request to MedlinePlus Connect, the service returns the closest matching health topic as a response.  MedlinePlus Connect also links EHR systems to drug information written especially for patients. For medication codes, MedlinePlus Connect accepts RXCUIs and NDCs. The API for using this service conforms to the HL7 Context-Aware Knowledge Retrieval (Infobutton) Knowledge Request URL-Based Implementation specification.

MedlinePlus responds to problem code requests in either English or Spanish. Currently, it supports requests for drug information in English only.  NLM is working on adding laboratory test responses to MedlinePlus Connect. We will also support an XML-based Web service at a future date.

You can find more background and technical information at http://medlineplus.gov/connect. If you are an EHR owner or developer interested in staying up-to-date on technical developments with MedlinePlus Connect, or talking to other organizations that are using it, join the free email list athttp://www.nlm.nih.gov/medlineplus/connect/emaillist.html. To send questions or feedback, use the MedlinePlus Contact Us link athttp://apps.nlm.nih.gov/medlineplus/contact/index.cfm.