Patient files opened to marketers - Washington Post today

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“Your medical record was meant for your medical care. Now your medical record

becomes a marketing tool.â€

— THOMAS MURRAY

President, Hastings Center

Patient files opened to marketers

Critics decry exemptions won through lobbying

By O'Harrow Jr.

THE WASHINGTON POST

Jan. 16 — New federal medical privacy regulations, touted by the Clinton

administration as a landmark of patient protection, will for the first time

explicitly permit doctors, hospitals, other health services and some of their

business associates to use personal health records for marketing and

fundraising.

THE RULES WERE INCLUDED in the federal regulations after a months-long

public relations effort by the industry. Under the exemptions, doctors,

clinics, hospitals and others that normally have access to medical records —

along with business associates working under contract with them — will be

allowed to send out individualized health information and product promotions.

A pregnant woman, for instance, could receive pitches about vitamins

or infant health-care products. A patient who has been treated for sexually

transmitted diseases could receive telemarketing calls offering condoms or

new medicines.

The exemptions also give foundations affiliated with hospitals

continued access to patient names, ages, addresses and telephone numbers for

fundraising initiatives. Such foundations raise billions of dollars annually

by soliciting patients and their families at medical facilities and at their

homes.

• U.S. moves to cloak medical records

• Special report: privacy issues

Officials of the Department of Health and Human Services, the White

House and some patient advocates said the new privacy regulations announced

Dec. 20 stand as an important new bulwark against the misuse of patient

information, notwithstanding the exemptions.

When the rules fully take effect in two years, proponents said,

patients will have a new right to access their own records; employers will be

prohibited from receiving personal health data, except for the administration

of health plans; and people who misuse private medical records, such as

selling them, could face fines or prison.

In addition, any health-care provider or service that uses medical

records will have to notify patients how they’re doing so. Patients also will

have the option of saying no to marketing or fundraising — but only after

they have been contacted at least once by a given entity.

Claxton, deputy assistant secretary for health policy at HHS,

said the department deftly handled the complex task of protecting medical

records while encouraging the flow of information to improve patient care.

“It’s the best we could do and we think we did a good job,†he

said.

“There’s going to be a lot of discussion as this is implemented. If changes

need to be made, they should be made.â€

TARGETING PATIENTS

But consumer advocates and privacy specialists worry the exemptions

will undermine the spirit of the rules and spur the use of confidential

records for marketing by specifically allowing activity that in the past was

often constrained by ethical or business concerns.

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Among other things, the regulations will permit pharmacies to share

patients’ prescription records with business associates to target patients

with letters reminding them to take medicine, or to send them “educational

materials†sponsored by drugmakers.

That sort of arrangement created a storm of controversy three years

ago when it became public that CVS Corp., Giant Food Inc. and other

pharmacies shared prescription information with a data-management company

called Elensys for targeted mailings. CVS and Giant canceled the programs

after customers complained.

The new marketing and fundraising rules have “exploded the old notions

of medical confidentiality and privacy,†said Murray, a medical

ethicist.

“Your medical record was meant for your medical care,†said Murray,

president of the Hastings Center, a medical ethics research center in New

York. “Now your medical record becomes a marketing tool.â€

Supporters of the new rules note that health-care providers now will

have to determine that products provide a health benefit before making a

contact with a patient. When contacting a patient, marketers and fundraisers

will have to disclose the source of personal information, describe their

financial benefit and explain why the individual was targeted for a

promotion, officials said.

Critics say that while patients will be allowed to say no to

promotions after being contacted, they will have to reach out to each entity

that has contacted them to exercise that right.

“The rules are filled with virtual rights: You reach for them and

they’re often not there,†said Gellman, a lawyer and privacy

consultant in the District, who has studied the regulations. “This authorizes

a kind of behavior that was once viewed as unethical or improper.â€

LOBBYING FOR CHANGE

Claxton, the HHS official, said officials faced the challenge of

distinguishing between educational material about products and services that

improve health, and marketing promotions sponsored by drug companies and

others.

Because the department concluded that getting health information to

patients was so important, officials decided to be more flexible on the issue

of marketing than the draft released in 1999, as long as health-care

providers meet guidelines for disclosure and give patients the ability to opt

out, among other things.

“What is communication for health care, and what is marketing?

Sometimes they’re the same thing,†Claxton said, adding that department

officials believe that doctors, hospitals and others still will be

constrained from doing anything that might offend patients.

Claxton said industry pressure played no role in the decision to

include exemptions for marketing and fundraising. He said he maintained

contact with some key groups that supported the changes as part of the normal

regulatory process. Those groups included the American Hospital Association,

the Association for Healthcare Philanthropy, pharmacy benefit managers,

insurers and consumers.

The company that worked with CVS and Giant, now known as Adheris,

urged regulators in comments on the draft proposal not to require pharmacies

to get “prior authorization†from patients to use prescription information

for targeted mailings.

Industry leaders acknowledged pressing for changes to the draft

regulation, which would have proscribed many fundraising and marketing

initiatives allowed under the final rules. Among the most aggressive groups

was the Association for Healthcare Philanthropy. Its members raised nearly $6

billion in fiscal 1998 for construction projects, to buy equipment, run

programs and so on.

The group wrote letters to HHS, met several times with regulators and

as recently as December participated in conference calls with them to clarify

issues. They turned to Rep. Ellen Tauscher (D-Calif.), among others on

Capitol Hill, saying a staffer called HHS officials on their behalf.

The association became so aggressive about the issue that department

officials told it to tone things down, according to officials in the

department and the group. “We stopped doing that because HHS said, ‘Hey, we

got it. We got your message,’ †said C. McGinly, the association’s

president and chief executive.

‘WHERE ELSE DOES IT GO?’

In the end, they got what they wanted — access to patient information

without having to get permission from patients first. “AHP Announces VICTORY!

Patient Privacy Regs Favorable to Health Care Philanthropy,†said the

group’s press release.

“By pulling together a public relations specialist, a lobbying expert,

writers and others to analyze the draft regs, comment, communicate to the

press, meet and educate the staff and members of key Congressional committees

and others, we were able to see that AHP was heard on this issue,†the press

release said.

The provisions don’t sit well with critics, who contend that patients

ought to have a right to say no upfront to uses of their medical records that

do not have a direct bearing on health care. Some critics also may be urging

states to write tougher rules of their own.

“Once they have open access, where else does it go? It is too big a

loophole,†said Sen. J. Leahy (D-Vt.), who may pursue legislation on

the matter. “In the digital