Job 1 for the AHIC successor? — by Nancy Ferris

Notice how the for-profit research industry wants access “baked” into all EHRs up front for research uses, to avoid getting individuals’ consents.

They call this a “value case” for the nation’s electronic health system. What great Lakoffian re-framing and propaganda. How do you argue against “value”?

It’s a “value” alright, just not a “value” for patients, because it sets up a system that is both unethical (no consent) and illegal (violates Amercians’ longstanding rights to privacy).

The story says the research industry wants open access to “de-identified” data, but that is NOT what they tell Congress or the regulators. They say they must have access to longitudinal data, which CANNOT be de-identified, because most research cannot be conducted using de-identified data.

The new AHIC 2 will be industry-driven and industry-paid for, with so-called “standards” being devised to meet the needs of corporations, not to adhere to the laws and ethics that governed the healthcare until the ’90’s and the advent of electronic systems for health data.

Today there are ‘smart’ technology solutions to make consent easy, cheap, understandable, and instantaneous (see the consents on HealthVault by application partners for a preview of how simple and clear and specific consents can be). Electronic consents can be interactive and actually explain things, rather than be densely written in legalese so no one understands them.

Why continue to use the kind of privacy-violating blanket coerced consents that were necessary in the paper health system? ‘Smart’ technologies can do a far better job. Using robust consent management tools, we can obtain valid and easy-to-understand specific, time-limited, and cheap consents from millions instantaneously.

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AHIC Successor names 15 board members

Appointments to the 15-member board of AHIC Successor, the replacement organization to the federally chartered healthcare information technology advisory panel, include five physicians, one of whom works for the largest for-profit payer, WellPoint; plus representatives from drugmaker Eli Lilly and Co.; retailer Wal-Mart Stores, the head of a new electronic-prescribing software vendor, Prematics; one official each from state and local agencies but no representatives from the nation’s larger provider and payer of healthcare, the federal government.

According to the announcement, made during the second to last meeting of the American Health Information Community, HHS Secretary Mike Leavitt and Veterans Affairs Secretary James Peake will serve as “federal liaisons” to the board. Robert Kolodner, the physician who is head of the Office of the National Coordinator for Health Information Technology, “will continue to coordinate federal input into the public-private process.”

Leavitt created AHIC in 2005 with eight of its original 17 members representing federal government agencies, including Leavitt, who appointed himself chairman. But from its inception, Leavitt promised that the federally funded organization would be replaced by a private-sector organization before the end of the Bush administration.

Job 1 for the AHIC successor?

Several organizations asked the American Health Information Community today to expand its scope and mesh data standards for medical research with its work on standards for e-health records.
But AHIC is going out of business at the end of the year, and it was a leader of the as-yet-unnamed AHIC successor organization who volunteered to consider whether the new set of tasks would be a worthy assignment for the new organization in the private sector.

Next president faces skeptical HIT crowd

Now that the presidential candidates, both Democratic and Republican, have taken their first shots at defining their ideas for health care and the role of IT, all eyes are turning to the future to try and determine how that might play out in a new administration.
The short answer is that no-one knows because, particularly in health care, the devil is in the details. And so far there’s been very few details forthcoming from the candidates about how they will use IT for health care reform.
For one thing, a new president won’t have total control of the field whenever he or she comes into power. They’ll have to deal with a number of partially formed initiatives that can’t just be wished away.
“They’ll have to come to grips with the legacy of the Bush administration and what (Health and Human Services) Secretary Leavitt has done,” said Scott Wallace, president and chief executive of the National Alliance for Health Information Technology (NAHIT).
The Office of the National Coordinator for Health Information (ONCHIT) will still exist when the new administration takes over, he said. And Leavitt is continuing to push ahead with his plans to replace the American Health Information Community (AHIC), which has been the government’s principal advisory body on such things as interoperability and standards, with a public/private organization.

13 Million Grant for AHIC Successor

T

he Department of Health and Human Services has announced a grant of up to $13 million will be awarded for the design, creation and operation of a successor entity to the American Health Information Community.

AHIC, created and chaired by HHS Secretary Michael Leavitt, advises the department on how to advance health care information technology, including creation of a national health information network. Leavitt believes a new public-private entity will be more representative of industry stakeholders. Some others, including U.S. Rep. Pete Stark (D-Calif.) and the AARP interest group, believe AHIC remaining under the federal government umbrella would be more accountable.

Under a Notice of Funding Availability issued by HHS, the department anticipates one award with an initial payment of $2 million to support the design and creation of a successor entity during a four-month period. A subsequent $3 million payment will fund initial ongoing operations of the entity. Up to $8 million in additional funding will continue to support operations assuming availability of funds.

{Bad news for consumers: the federal government plans to completely ‘privatize’ the oversight of the health IT system by ‘privatizing’ AHIC, the current public-private consortium it set up to guide the development of the health IT system. It’s not that AHIC has so far protected the best interests of patients and consumers, but at least federal agencies that in theory have oversight and a duty to protect citizen’s interests are members of AHIC. AHIC is dominated by private industry appointees who are building the national health information network to facilitate the data mining and sale of every Americans’ health records. Consumers control none of their sensitive health information today—this new plan to privatize AHIC will ensure that never changes because its successor will have no public or government oversight. And the feds are going to grant some corporation $13 million dollars to set up the successor to AHIC. Ensuring private industry is in charge of the nation’s health information is like putting the foxes in charge of the hencoop.}

Kolodner unveils AHIC’s privacy policy framework

Robert Kolodner, the head of the Office of the National Coordinator for Health Information Technology at HHS, revealed at a meeting of a key federal healthcare IT advisory panel Tuesday that his staff has begun work on a healthcare privacy policy to accompany the government’s IT promotion efforts.

Kolodner’s presentation on Developing a Privacy and Security Framework came near the close of a meeting of the 18-member American Health Information Community in Washington. The AHIC was established in 2005 by HHS Secretary Mike Leavitt to advise him on healthcare IT policy. Kolodner co-chaired the AHIC meeting with Leavitt. It was his first AHIC meeting as co-chairman, replacing David Brailer, who resigned last week.

Kolodner said members of the AHIC’s staff have been working hard on a framework of privacy principles, setting up a comparison of principles from five sources that have developed “high-level” policy statements over the past four decades. The goal is to build a national consensus around a “harmonized” set of privacy principles.

Health Information Privacy: What Do Doctors and Patients Want and Need?

n the last few weeks we have had a number of reminders that management of the privacy of patient records remains a contentious and difficult area. The first key reminder came in late February 2007 when Paul Feldman, co-chair of the American Health Information Community’s (AHIC) Confidentiality, Privacy and Security Workgroup, submitted his resignation to the interim National Coordinator for Health Information Technology at the Department of Health and Human Services (HHS).

AHIC (which has the same role as the Australian Health Information Council also rather co-incidentally AHIC) is the peak health IT policy advisory board in the US and provides advice directly to the US Secretary for Health and Human Services (the equivalent of our Federal Health Minister).

In his resignation letter Feldman writes that the workgroup “has not made substantial progress toward the development of comprehensive privacy and security policies that must be at the core of a National Health Information Network (NHIN).”

Given this resignation comes after six meetings and many months of work, the degree of difficulty in reaching a consensus between parties is obvious.

The second reminder came with the April 2007 release of a survey conducted among UK GPs regarding the sharing of clinical records electronically with the UK NHS ‘Spine’ which is a secure repository of shared electronic patient records which under appropriate conditions can be accessed to assist in patient management anywhere in the UK.

{Australian health blog about how electronic health records and privacy rights are handled around the world features Patient Privacy Rights as the “one organisation and advocacy entity in the US that ‘gets it’”—‘it’ meaning the need for patient control of records in electronic health systems. In the UK, physicians are FAR more protective of their patients medical records than in the US. 40% will not share patient records with the national data base, 80% believe that electronic sharing of records can threaten patient confidentiality, and 60% oppose ‘opt-out’ of records sharing, preferring that patients ‘opt-in’. ~ Dr. Deborah Peel, Patient Privacy Rights}

AHIC reviews, sends back EHR recommendations

The American Health Information Community on Tuesday sent back for revision a list of recommendations by its work group on electronic health records aimed at boosting EHR adoption, including a controversial incentive proposal that would reward doctors who have EHRs, but penalize those who do not.

David Brailer, co-chairman of the AHIC, a public-private policy healthcare information technology policy advisory panel created by HHS Secretary Mike Leavitt in 2005, asked fellow AHIC member and EHR work group leader Lillee Smith Gelinas to take the recommendations and tweak their language and have them checked by lawyers.

Finally, Brailer advised Gelinas, vice president of clinical performance at group purchasing organization VHA, that the EHR work group should “have some forum with an open hearing so we can have more debate” on the proposals.

{AHIC does not recognize that many physicians choose not to use electronic medical records systems because the privacy and security risks are far greater than in paper systems. Even though ‘smart’ technology exists that can get electronic consent instantly and share some of our data while blocking access to the rest, electronic authorization and consent technologies are not widely used. Today, most health data sharing is determined by what providers want access to, not what patients give consent for. The AHIC EHR plan to reward doctors for buying electronic systems that do not protect the privacy of medical records is not only expensive but bad policy. Why buy defective products? If the government is going to pay doctors to buy and use electronic records systems, it should first require that they have state-of-the-art privacy and security measures. Pay-for-Performance schemes raise other serious problems. Instead of national medical specialty organizations using science and clinical wisdom to decide the standards for effective treatment, industry-driven organizations are setting standards for medical care. Who do you want to decide what the best treatment is for you? ~ Dr. Deborah Peel, Patient Privacy Righ

HPP Resigns from Government Privacy Workgroup

Letter to Robert Kolodner, M.D. – Interim National Coordinator for Health Information Technology

Robert Kolodner, M.D.
Interim National Coordinator for Health Information Technology
U.S. Department of Health and Human Services
330 C Street SW Ste 4090
Washington DC 20201

Dear Dr. Kolodner:

On behalf of the Health Privacy Project (HPP), we submit this resignation of HPP’s Deputy Director Paul Feldman as the Co-chair of the American Health Information Community (AHIC) Confidentiality, Privacy, and Security Workgroup (CPS). We have determined we are unable to continue given that the workgroup has not made substantial progress towards the development of comprehensive privacy and security policies that must be at the core of a nationwide health information network (NHIN). The Health Privacy Project’s mission is to raise public awareness of the importance of ensuring health privacy in order to improve health care access and quality for individuals and communities; our website is http://www.healthprivacy.org/. We support the development of an NHIN with strong and enforceable privacy and security rules in place and believe that the failure to achieve a privacy framework acts as a significant barrier to a robust and secure environment for e-health.

As stated, AHIC’s mission is “providing input and recommendations to Health and Human Services on how to make health records digital and interoperable, and assure that the privacy and security of those records are protected, in a smooth, market-led way.”[1] On July 28, 2006, your office invited HPP to serve as Co-chair of the newly forming CPS, whose general charge is to make recommendations to AHIC regarding the protection of personal health information in order to secure trust, and support appropriate interoperable electronic health information exchange. The original charge for CPS as discussed at the May 16, 2006 AHIC meeting also includes developing “a scope of work for a long-term independent advisory body on privacy and security policies.”[2] The specific work of CPS has been focused in service to three of four AHIC breakthrough use cases.[3]

{Today’s resignation of the Health Privacy Project from AHIC and HHS signals a vote of no confidence re: the will of AHIC and HHS to ensure patients’ privacy rights in the national electronic health system. This is a very important statement from a respected privacy organization. ~ Dr. Deborah Peel, Patient Privacy Rights}

Bill would lead to federal privacy standard for IT

HHS would recommend to Congress a single federal privacy standard to promote electronic medical records and e-prescribing, replacing state and federal laws, under legislation introduced by Rep. Nancy Johnson (R-Conn.). The bill also would set up a certification process to ensure health information technologies meet interoperability standards; direct HHS to revamp its 30-year-old diagnosis coding system; and require the HHS secretary to report to Congress within two years on the progress of the American Health Information Community initiative to develop a national strategic plan to implement a health IT infrastructure.

Earlier this month, the federal government proposed relaxing rules to allow hospitals and doctors to share IT hardware, software and training. Johnson’s bill would codify that effort.