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Wakefield's Wake, Part 4: Overcome confidentiality rules used to hide shaky science

Wakefield's Wake, Part 4: Overcome confidentiality rules used to hide shaky science

Picture of William Heisel

Parents of children with autism (or any other condition) may be reluctant to hand over medical records to a health writer. Physicians may say the records are confidential and that the patients shouldn't be talking to a reporter all. Hospitals may invoke the Health Insurance Portability and Accountability Act (HIPAA).

Investigative journalist Brian Deer ran into some of these confidentiality concerns, too, when attempting to expose the faulty science behind a study that attempted to link autism to the measles, mumps and rubella (MMR) vaccine.

After tracking down parents of autistic children, he found that parents were being pre-screened by Andrew Wakefield and his colleagues and were essentially coached to provide information that would connect autism to a bowel-brain disorder Wakefield was trying to concoct. Deer tried to figure out why there was no child in the published paper whose symptoms matched those Deer had seen in medical records for "child 2" and heard described by child 2's mother. To understand why, Deer questioned Wakefield's colleague, John Walker-Smith

 "Well, I can't really comment," Walker-Smith told Deer. "You really touch on an area which I don't think should be debated like this. And I think these parents are wrong to discuss such details, where you could be put in a position of having a lot of medical details and then try to match it with this, because it is a confidential matter."

Deer writes, "It was not merely medically confidential, it was also legally protected: a double screen against public scrutiny."

That's why reporters need to push past glib suggestions that parents are wrong to be talking about these issues or that reporters are wrong for talking with the parents.

One of the ways I have pushed past is by asking people if I can talk with their doctors directly and providing them with a release form to sign. I created a short form years ago based on a standard form that has been used by hospitals and physicians to allow patients to waive HIPAA protections. The terminology is important. You want to make it clear to patients and their parents that they are protected by HIPAA from having their private medical information disclosed and that by signing this form they are waiving those protections for the purposes of providing you information for a story.

Whether you use this form or something like it, a few elements are key:

1. Allow parents and patients to be specific about which records they want to release.

2. Make it clear that they don't have to sign this document in order to receive treatment. Nor do they have to sign it at all.

3. Give the form an expiration date. Nobody likes the idea that a reporter can have full access to their health records indefinitely. This way, you are giving them a window.

4. Provide a cancellation policy. Tell them how to cancel this disclosure form by telling them where to write the hospital or doctor in question.

5. Make three copies. One for you.One for the patient or the patient's parents.One for the provider.

I have never had a source look at this document and choose not to sign it. I have ended up arguing with hospital lawyers (and press officers), but this document has won every time.

If you want a copy, send a note to askantidote@gmail.com. I also am providing the text below for easy copying and pasting.

Patient Authorization for Use and Disclosure of Protected Health Information

By signing, I authorize CHILDREN'S HOSPITAL and its staff to use and disclosecertain protected health information about me or my child to WILIAM HEISEL. I authorize CHILDREN'S HOSPITAL and its staff to discuss my child's case and her medical records.

This authorization permits CHILDREN'S HOSPITAL and its staff to use, disclose and discuss the following individually identifiable health information about me. (Here is where you specifically describe the information to be disclosed, such as date(s) of services, type of services, level of detail to be released, origin of information, etc. You also can do what I usually do after consulting with the patients or parents, write "all information."): ALL INFORMATION RELATING TO PATIENT SMITH AND HER PARENTS MR. & MRS. SMITH.

The information will be used or disclosed for the following purpose: THE REPORTING AND WRITING OF A STORY INVOLVING PATIENT SMITH.

The purpose is provided so that I can make an informed decision whether to allow release of the information. This authorization will expire on: JANUARY 19, 2012.

Neither CHILDREN'S HOSPITAL nor WILLIAM HEISEL will receive payment or other remuneration from a third party in exchange for using or disclosing the medical information.

I do not have to sign this authorization in order to receive treatment from CHILDREN'S HOSPITAL. In fact, I have the right to refuse to sign this authorization.

When my information is used or disclosed pursuant to this authorization, it may be subject to redisclosure by WILLIAM HEISEL and may no longer be protected by the federal HIPAA Privacy Rule. I have the right to revoke this authorization in writing except to the extent that CHILDREN'S HOSPITAL and its staff have acted in reliance upon this authorization. My written revocation must be submitted to:

CHILDREN'S HOSPITAL
Address
Town, State, Zip

 

Signed by: ______________________________, _______________________

Signature of Patient or Legal Guardian, Relationship to Patient

______________________________, _______________________

Signature of Patient or Legal Guardian, Relationship to Patient

_______________________________, ______________________

Print Patient's Name, Date

_______________________________

Print Name of Legal Guardian, if applicable

_______________________________

Print Name of Legal Guardian, if applicable

 

Patient/guardian must be provided with a signed copy of this authorization form.

Next: Treat advocacy groups with a healthy dose of skepticism.

Related Posts:

Wakefield's Wake, Part 1: Media should help undo damage from vaccine-autism hoax

Wakefield's Wake, Part 2: Passionate parents of autistic children can be tricky sources

Wakefield's Wake, Part 3: Trust parents of autistic kids, but verify stories with health records

 

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