Groups urge patient control of records

November 16, 2005: In the wake of polls showing most Americans have privacy worries as their personal health data goes electronic, consumer groups want lawmakers to ensure that the ultimate control over medical records remains in the hands of the patient. Congress is considering a proposal to build a national Health Information Network, but two patient groups — the Electronic Privacy Information Center in Washington and the Austin, Texas-based Patient Privacy Rights Foundation — told United Press International that the measure is still weak on privacy safeguards.

The groups say that the following protections should be included in the nascent health information network: The patient should determine who can see and use his or her medical records. The patient should not have his or her medical records seen or used by an employer. The patient should not be forced to give up privacy to get medical treatment.

The 21st Century Health Information Act, sponsored by Rep. Patrick Kennedy, D-R.I., is the only bill currently under consideration in Congress that allows people to opt out of being part of a national health database.Patients have the option of allowing only designated healthcare providers to access their individually identifiable information concerning diagnosis and treatment of sexually transmitted diseases, addiction and mental illnesses. REp. Kennedy said that Health IT is the inevitable wave of the future, but reassuring a nervous public is a cornerstone to its success.

Despite their concerns, consumers generally had a favorable view of new health technology — 59 percent were willing to share personal health information when it could result in better medical treatment.

Lancet “The muddle of US electronic medical records”

May 7, 2005: An article in the Lancet (The Lancet 2005; 365:1610-1611) states that the USA’s electronic medical records system is “a muddled collection of disjointed parts”. Mark Leavitt, medical director for the Healthcare Information and Management Systems Society (HIMSS) considers “There has been no incentive for [providers] to share data and really no incentive for vendors to build interoperability into their products because the customers weren’t asking for it”. David Brailer was appointed by President Bush last May as the country’s first National Coordinator for Health Information Technology and has set out a framework for Electronic Health Records (EHR) development and is now assimilating 500 suggestions from stakeholders into a complete strategic plan for a national health information network. A Presidential Commission on Systemic Interoperability is slated to produce its own comprehensive strategy by October.Brailer considers that EHR technology is “prohibitively expensive for small physician practices. While hospitals and larger practices have the capital to invest in EHR-supporting technology, physicians in smaller practices are reluctant to spend the up to US$36 000 per physician necessary to purchase a system, and are receiving little help from payers which view these investments as business overheads rather than part of patient care”. Brailer is working on ways to encourage payers to contribute to EHR purchases. Leavitt chairs the Certification Commission for Health Information Technology that is sorting through the vast array of available EHR software to certify which systems meet specific standards, including interoperability. Current EHR systems are not only expensive, but also require a major change in the way practitioners work, resulting in “a marked increase in physician work load as they convert from paper to screen”. Dave Garets, CEO of the research arm of HIMSS, comments that widespread adoption of EHRs in the USA will occur when system prices drop to a level individual physicians can afford. Robert Tennant of the Medical Group Management Association, argues that the Bush Administration needs to invest more money in EHR and says that “The primary beneficiaries [of EHR cost savings] are going to be the health plans”, in the form of reduced procedure redundancy and improvements in chronic-care management. Patient privacy is not receiving high enough priority according to Janlori Goldman, director of the Health Privacy Project. Proponents argue that well-designed EHRs are safer than paper records because they can be encrypted, will require passwords, and provide an audit trail. Goldman counters that the magnitude of harm with a paper record passing through the hands of a few individuals is small compared with the potential injury associated with private medical information moving through cyberspace and that HIPAA rules should be strengthened. Privacy concerns derailed earlier efforts in the USA to establish unique patient identifiers, making it more difficult to use EHRs to develop a national database for clinical research. Nonetheless HIMSS’ Leavitt says the current regional approach to patient data collection and storage still holds huge promise for research improvement as EHRs expand. Large collections of anonymous data could simplify the process of feasibility studies for clinical trials by identifying populations with specific conditions, Leavitt says. Countries that are farthest along are those with more centralised health systems, comprehensive strategic plans, and the willingness to make the necessary investment. Leaders include many European countries, Canada, Australia, China, South Korea, and Japan. US health technology advocacy group eHealth Initiative calls the UK EHR campaign “the largest-scale initiative underway in any country worldwide”. The goal is to have online records for 50 million citizens, with connections between all physicians and hospitals by 2010.