OP-ED: Health Information Exchange – Consumers should choose to join
by Ellen Andrews | Jun 28, 2010 10:25am
(2) Comments | Commenting has expired
Posted to: Health Care, Opinion
Connecticut needs a health information exchange. But the state’s current proposal calls for consumers to be defaulted into the exchange unless they affirmatively opt out and the loss of privacy could be too high a price for consumers.
Converting health records from antiquated paper systems to electronic files that can be shared has enormous potential to save lives, improve the quality of health care, reduce duplication of services, and save money.
E-health initiatives are one of the few health reform proposals that almost everyone agrees with. Providers need up-to-date medical information to deliver the best care. With e-records, an ER doctor treating an unconscious patient can have the information he needs to provide best treatment.
A critical part of any health information exchange is protecting the privacy and security of that health information. While the doctor treating you needs the information, your neighbor, your employer, or a marketing firm should never see your records. Both Connecticut and federal laws have strong protections to ensure this never happens, especially for sensitive areas such as HIV, mental health and substance abuse treatment.
A health information exchange pilot program will start in July for Connecticut Medicaid clients, connecting a few hospitals, clinics and doctors’ offices. eHealthCT, the nonprofit group that designed the pilot, has brought together hospitals, doctors, insurers, employers, clinics, pharmacists, labs, and consumers to build the system, and in full disclosure, I am a board member.
eHealthCT consulted with a wide group of legal and technology experts, consumer advocates and providers in a long, public process to develop a strong privacy policy to protect patients’ sensitive information. A critical component of the policy was a requirement that patients sign a form agreeing to share their information in the exchange. Patients are informed of the benefits but have the clear option not to participate. States with similar opt-in policies find that the vast majority of patients sign the form; not surprisingly, most of us sign whatever we are asked to.
Meanwhile, the Connecticut Department of Public Health has spent $1.3 million hiring consultants to develop a privacy policy for a statewide health exchange. Their committee includes no consumers or advocates, and is recommending an opt-out policy that would default all consumers into the system unless they actively opt out.
Such a policy would require patients to know their rights and to navigate the state’s paperwork to decline. More than that, the DPH policy would require doctors and hospitals to edit every entry that goes to the exchange for any legally sensitive information. That would require a review of every prescription to be sure it isn’t a clue to a diagnosis and every doctor’s note for references such as patient depression, or HIV infection. And the doctors’ office or hospital would be liable for any oversight.
Worse yet, doctors and hospitals are not required to join the exchange. Many may choose not to participate, given the additional workload in reviewing and the new liability, and if doctors and hospitals don’t join the system will fail.
Under the DPH information exchange if there is a breach of privacy the public outcry will be massive, and rightfully so.
But none of this needs to happen. The state has a well-considered privacy policy model from eHealthCT. Consumers probably haven’t heard anything about this. The public health department held a public comment forum this week, but did little to publicize it. The draft plan is on online for comment, but buried on the state, without this latest recommendation.
The plan will be submitted to the federal government in September; if it isn’t good enough, Connecticut could lose out on over $7 million to build the exchange.
Nothing is more important to our well-being than creating a system that gets health information to the people who need it to save lives, while securing our most private health information from people who shouldn’t have it. The policy the state of Connecticut is considering jeopardizes both.
Ellen Andrews is Executive Director of the CT Health Policy Project, a non-profit research and advocacy organization working to expand coverage to affordable, quality health care for all Connecticut residents. The Project provides policymakers with information about options for coverage and provides assistance to consumers struggling to access health care in Connecticut.
(2) Comments
posted by: GoatBoyPHD | July 6, 2010 4:03pm
2nd copy. Same post. Spell checked.
The problem with projects like the Federal Connect NHIM project is it only facilitates information exchange for EMRs.
The great success of Veterans Affairs is driven by the decision to make the entire EMR system part of a holistic CRM and ERP system to have complete visibility into the system to drive efficiencies.
To put it more bluntly the data warehouse has the both the revenues and expenses as well as the products and services bought and sold linked patient records and diagnosis. End-to-end visibility.
It has the smell of a professional, well-run business to it.
There are those that will try to sell sharing patient data as some sort of great cost saving panacea. In fact it isn’t.
The real money to be saved is using the computer information in hospital and office operations to drive down costs.
The overlap in EMR initiatives discussed here are just a tiny microscopic part of the problem in CT and US Health Care.
There are 10 other projects going on as well with several committees pushing for the similar yet different so-called standards and of course access to funding.
Make no mistake: hospitals and physicians and health agencies prefer these systems to be voluntary information exchanges only.
They do no want anyone peering into their operations and driving new efficiencies in operations or god forbid lawsuits from misdiagnosis..
Get a clue. Knowing what tests and drugs have been performed is about all that will get shared. Major surgery and allergies, and basic medical demographics.
Anything that could trigger a lawsuit? Nope. Anything that would peer into facility operations? Nope.
The privacy of the patient is being protected yes.
That isn’t the only privacy being protected is it? It’s system wide visibility that’s being hidden and ‘protected’. Anything that could drive operational costs lower and result in group purchasing or room and beds pace allocation and physical plant usage? Nope. Gotta hide that stuff deep in a locker somewhere. On paper. Archived. In triplicate.
Complete metrics on patient care based on diagnosis and complete visibility into all services rendered and why? No.
This is where Veterans Affairs make CT’s proposal look like kids with tinker toys. Or awfully deep pockets to fund that kind of inefficiency with so many competing systems.
The best part: the people who have been 20 years late arriving to the Information Technology party and instead performing ‘Information Technology Malpractice’ are now leading these initiatives. Need I say more?
God forbid private business builds and designs the systems after scoping the deliverables and objectives and mission statement to deliver maximum ROI.
posted by: Dr. J. Robert Galvin | July 6, 2010 11:11am
The Department of Public Health shares Ellen Andrews’ belief that health information technology is one of the most important aspects to health care reform and holds great promise to improve the quality of health care while reducing costs. Moreover, we agree that protecting the privacy and security of consumer health information is paramount to the state’s health information technology and exchange plan.
However, while Ms. Andrews may disagree with Connecticut’s current recommendations concerning consumer privacy policy, her assertion that the process used to reach these policy recommendations is anything less than thoughtful, rigorous, transparent, and inclusive are simply untrue.
In 2009, the Connecticut General Assembly passed legislation naming the Department of Public Health the lead health information exchange organization for the state, establishing a health information technology and exchange advisory committee to examine and identify specific ways to improve and promote health information exchange.
The Health Information Technology and Exchange Advisory Committee is a legislatively appointed body charged with developing standards for health information exchange in Connecticut, including standards for privacy and security. The committee is comprised of a diverse group of members representing the public and private sectors, as well as health care consumers.
The work of the committee has been inclusive, open and transparent with opportunity for input from any interested party. The Advisory Committee has met at least monthly since October 2009. Meetings are publicly noticed and the agendas and minutes are available on the Department of Public Health’s website. Each agenda includes a public comment item and members of the public have utilized this time to make their views known.
The advisory committee’s Legal and Policy Subcommittee has developed a consent option policy recommendation for the department’s strategic and operational health information technology and exchange plan. This subcommittee also includes consumer representation.
The Legal and Policy Subcommittee has given serious consideration to privacy concerns. It considered work on consent options that protect privacy done by others in Connecticut and in other states, and has developed a consent option recommendation that follows current federal and state laws regarding confidentiality.
We believe the subcommittee’s consent option recommendations will facilitate the exchange of health information and improve the quality and efficiency of health care provided to patients. It is generally recognized as the model most likely to result in a successful, viable health information exchange.
The consent option recommendation is just the beginning of the discussion on development and implementation of the consent model for the health information exchange. Any interested party who would like to be part of this ongoing discussion should contact the Department of Public Health at (860) 509-7270.
J. Robert Galvin, M.D., M.P.H., M.B.A.
Commissioner
Connecticut Department of Public Health