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As records go online, clash over mental care privacy

At her weekly therapy sessions, Julie revealed her most uncomfortable secrets: depression, debt, childhood sexual abuse. Her psychiatrist at Massachusetts General Hospital would then type a summary into Julie’s computerized medical record.

With that, more than 200 pages of sensitive notes became available to any doctor who cared for her within the sprawling Partners HealthCare system. She discovered this only when one doctor later referenced the notes.

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Julie, a 43-year-old lawyer, was unnerved, then angry. “The details are really nobody’s business,” she said.

But Partners disagrees. Doctors must have a complete picture to make accurate diagnoses, the organization argues. And having different rules for psychiatric records contributes to the stigma of mental illness.

The clash reflects the delicate privacy issues surfacing as electronic medical records become widespread. Providers in separate networks are preparing to share patients’ records more widely online — to better coordinate care and cut wasteful spending. This will probably intensify the debate about what should and should not be shared, as well as fears about the unauthorized release of patient information.

Both the House and Senate health care cost-control bills passed this spring require the state to create a system for sharing records across provider networks. This is also a priority for Governor Deval Patrick, whose administration already is working on the project, which includes stringent patient privacy protections.

Dr. David Blumenthal, Partners’s chief health information and innovation officer and former national coordinator for health information technology for the Obama administration, said the privacy issues “are huge.’’ Though technology has advanced to allow providers to share records, patient trust remains an obstacle to adoption of these systems, he said.

‘These are issues I haven’t talked about to anyone . . . not even my closest friends’

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“It’s one thing to give your psychiatrist the right to share your information [with certain doctors], it’s another to enter your data into a system that makes it available with relative ease to an unknown number of physicians who may be involved in your care. Most Americans see the benefits as much greater than the risks. But there are groups who are very uncomfortable with their records being shared with people they have not specifically designated.’’

Doctors and hospitals in Massachusetts have been quicker than those in many other states to adopt computerized patient records, with between 35 and 45 percent using at least a basic system, according to a recent study.

Under federal health privacy laws, patients must sign a standard permission form for providers to share their medical information for purposes of treatment and billing. Policies on sharing psychiatric notes vary.

At Beth Israel Deaconess Medical Center, for example, psychiatrists decide whether to put notes in a locked area of the record, which other doctors can see only if they provide written justification.

At Partners, patients can ask that notes be restricted, but the organization evaluates the requests on a case-by-case basis. In the case of Julie — who does not want her full name published because she’s worried about being stigmatized — Partners eventually agreed to restrict access to the therapy notes written between 2002 and 2009. But the provider network would not automatically sequester future notes.

Julie believed she should control who sees her psychiatrist’s notes. “These are issues I haven’t talked about to anyone . . . not even my closest friends,” she said. As a result, she found a therapist outside the Partners system, who will not put notes in an electronic record.

Dr. JudyAnn Bigby, Patrick’s secretary of Health and Human Services, is overseeing what will be the first statewide “health information exchange,’’ which will enable providers in different networks to share patient records online — but only with patients’ permission, she said.

Patients will decide which records they are willing to share among providers, and the consent forms will be kept in a central database. For example, a patient may decide to share medical records from Mass. General but not those from McLean, a psychiatric hospital, said Dr. John Halamka,chief information officer at Beth Israel Deaconess Medical Center and an adviser to state officials. If the patient ends up in the emergency room at Beth Israel Deaconess, for example, doctors there would not be able to read the McLean records.

Halamka said the state is still working out whether patients will be able to share portions of their records from a particular hospital, while still restricting sensitive information, which is more technically complicated.

The House health care cost-control plan requires all providers to have “interoperable’’ medical records by 2017. Representative Steven Walsh, a Lynn Democrat who led the House effort, said state officials will develop privacy rules later, including when a patient’s consent is required for information to be shared. He said he believes treating doctors in different networks should have access to a patient’s diagnosis, medications, and other key information, but not necessarily to psychiatric notes.

Dr. Scott Monteith, a Michigan psychiatrist who was on a panel with Julie at a privacy conference in Washington, D.C., earlier this month, said widely sharing detailed mental health information could make patients clam up.

“There is a huge stigma and patients know it. They don’t tell their story,’’ he said.

But Dr. Thomas Lee, head of Partners’s physician network, said segregating psychiatrists’ notes fosters that stigma. “Schizophrenia and Parkinson’s disease are both biochemical disorders of the brain. Why is one considered mental health and the other medical?’’

Primary care doctors can learn important information about their patients from psychiatrists’ notes, such as whether a person is at risk for suicide, Lee said.

“Psychiatrists really talk to patients and they really listen,’’ he said.

Regardless, Julie said the decision is for her and other patients to make, not providers.

When she began seeing her psychiatrist in 2002, the therapist never mentioned the possibility of separating therapy notes from the rest of her computerized record, Julie said. Seven years later, Julie decided to switch therapists and requested her records. She saw then that they included the 200 pages of notes.

But she didn’t realize other doctors had access to these notes until she went to see a new internist for a stomach ache. She wanted him to manage her medications for bipolar disorder while she found a new therapist. He gave her a cursory exam and encouraged her to see a psychiatrist, she said in an interview. The doctor told her he had read the notes and was not comfortable prescribing her medications, although he eventually agreed to do so.

“A lot of doctors don’t really feel comfortable with people who have a mental illness,’’ she said. “They don’t have enough training and even good doctors will make a judgment and won’t try to rule out other things. They make the assumption that it’s psychosomatic.’’

Liz Kowalczyk can be reached at kowalczyk@globe.com.

Correction: Because of a reporting error, this story about misstated a federal health privacy law. Under the law, commonly called HIPAA, providers must notify patients that their health information can be shared for specific purposes including treatment and billing, and patients are asked to sign a form acknowledging they have been informed.

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