While the trusts would manage the medical data, consumers would control their information by authorizing access to and use of their data by doctors and other third parties.
The Independent Health Record Trust Act, which was introduced into Congress in mid-July by Rep. Dennis Moore, D-Kan., and on last count this week has bi-partisan support from 49 House members, aims to create independent health record trusts, or IHRTs, that would manage the electronic medical records of patients upon voluntary participation by consumers signing up for these electronic accounts.
The IHRTs would be allowed to generate revenue through charging consumers and other participants account and transaction fees, as well as from the sale of information to third parties, such as researchers and pharmaceutical companies.
However, as an incentive for doctors to use and contribute data to the trust, health care providers would not be charged fees for accessing the trust's data. On top of that, doctors also could be financially rewarded for submitting authorized patient data to the trust through "sharing" the trust's revenue. The "revenue sharing" with doctors would be non-taxable income for the physicians, another benefit.
Under the proposal, the records managed by the trust would "travel" with the individual through life, and not be controlled or owned by any particular health care provider, employer, payer, or other party.
The bill instructs the Federal Trade Commission to "promulgate regulations" for the trust, including requiring the trust to notify patients or others of any security breaches.
Under the bill, the FTC, along with the National Committee on Health and Vital Statistics, would "prescribe standards for the establishment of certification, operation, and interoperability of the health record trusts."
The goal of the bill is to promote wider use of electronic health data by doctors while addressing privacy concerns of consumers, says David Kendall, senior fellow for health policy at the Progressive Policy Institute, a research and education organization.
Despite the goal set out by President Bush three years ago for most Americans to have electronic health records by 2014, today only about 9% of doctors offices use digital records for patients, says Kendall. By paying doctors to submit authorized patient data to IHRTs, and by allowing doctors free access to the network and the latest available information, doctors have an incentive to sign up, Kendall says.
Doctors have been stubborn laggards in the adoption of health IT in large part because of the financial and time investments they require, without any clear monetary reward for the practice after the deployment. Most of the cost savings and financial reward in the deployment of e-health record systems come to insurance companies and other payers through the elimination of paperwork, reduction of redundant testing, streamlined processes, and reduced medical errors that cause patient complications.
With the proposed health record trust model, "there aren't a lot of barriers for doctors," Kendall says. In addition, the consent that patients would provide the trust about the access to and use of their data would also help address privacy concerns, he says.
For the most part, the availability of personal medical records to consumers now comes from their health care providers or benefits plans allowing individuals to access slices of their information online.
And while groups of health care providers across the country in recent years have been attempting to create "regional health information organizations," or RHIOs, to share digitized patient records, many of those efforts have struggled because of financial and legal issues.
"RHIOs don't generally have a sustainable financial model," Kendall says, in large part because many were launched with government grants or seed money from insurance companies or non-profit organizations. "So, I could see the potential for RHIOs to become independent health record trusts," he says.
Also, in recent years employers such as EMC and IBM have begun providing personal health records to employees via third-party portals like WebMD, which also aggregates patient data from insurance claims, labs, and other sources.
The latest and largest effort by employers to provide workers with digitized personal health records was launched last December by Dossia, which includes a coalition of six companies, including Intel and Wal-Mart.
However, that effort in recent weeks has been slowed down by a legal dispute with its primary technology provider, Omnimedix. Plus, because Dossia is employer-sponsored, Kendall isn't sure that model would gain the level of confidence among consumers that a non-biased, independent trust would get.
As proposed by the new bill, the trusts would ensure confidentially, privacy, and security of patient data, providing consumers control over who has access to their data, or what parts of the information.
So, for instance, a patient could limit which doctors have access to his or her mental health information and whether a pharmaceutical company conducting clinical research could access the patient's drug information. Patients could also add their own notes into their records, although patients would not be allowed to alter the data from health care providers, such as doctors and labs.
While the trusts offer a different angle on promoting the use of health IT by doctors, not everyone is sold on the idea that the model removes financial barriers to physicians.
"Unless doctors are going to hire someone to enter data into the trust's systems, they're still going to need an electronic medical record of their own" to send patient information to the trust, says Keith MacDonald, a research director at First Consulting Group.
But on the brighter side, "this seems to address concerns about patient privacy and patients having control over their own records," he says.