Friday, April 21, 2000
Charities object to rules on privacy
Former patients won't be on list
BY Derrick DePledge
Enquirer Washington Bureau
WASHINGTON — Health care foundations such as the Bethesda Foundation in Cincinnati are anxious about new medical privacy rules that could restrict access to a lucrative source of donations: former patients.
Fund-raisers use names compiled from admission, outpatient and billing records in a variety of marketing and direct-mail appeals.
In 1998, the latest year statistics are available, as much as $3.5 billion of the $5.7 billion collected by nonprofit health foundations was tied to patient contributions.
The U.S. Department of Health and Human Services may shield the demographic information unless foundations obtain prior consent from patients. The rules, which are expected later this year, are intended to protect the confidentiality of medical records.
“This could have a traumatic effect,” said Patrick Ward, president of the Bethesda Foundation in Cincinnati, which raises money for health and medical education programs. “We're talking about our ability to provide health care for this community.”
The foundation, one of several nonprofit health care advocates in the Tristate, relies on patient contributions for about $500,000 of its $3 million in revenue.
The money helps pay for the foundation's community outreach, such as behavioral counseling in urban elementary schools, a parish nurse program in inner-city neighborhoods and paramedic training.
“It's pretty critical to the way we do basic fund raising,” said Mr. Ward, who is worried the foundation may have to limit its work if donations stagnate.
A health care reform bill approved by Congress in 1996 required national medical privacy standards by August of last year. In the absence of congressional action — and lawmakers were unable to agree on a policy — the bill left responsibility with the Department of Health and Human Services.
The department has proposed several new rules, including the right of consumers to obtain details about how their medical records have been disclosed. Hospitals or insurance companies that violate patient privacy would be subject to new civil and criminal penalties.
Health care providers and their business partners could still share patient information related to treatment and payment but would have to get “express authorization” from patients to use the data to market health services or raise money. The authorization statements must include a reason the information is sought as well as any commercial gain from its use.
Campbell Gardett, a spokesman for the department, said federal officials recognize the potential impact on nonprofit foundations and have yet to settle on a final policy.
William McGinly, president of the Association for Healthcare Philanthropy in Falls Church, Va., said foundations follow a code of ethics that values patient privacy. Most nonprofit foundations obtain only the name, address and telephone number of patients and refuse to sell donor lists to outside direct-mail or telemarketing firms.
“That would be unethical. It's the last thing we want to do,” he said. “You'd destroy any kind of trust a donor has with an institution.”
Mr. McGinly said hospital staff often sorts through records and excludes certain patients before providing the names to fund-raisers. Minors, people with mental illnesses or senior citizens on Medicare usually would not receive a charity sales pitch.
The Bethesda Foundation typically sends fund-raising letters within a few months after patients visit one of several affiliated hospitals. A patient may get two or three letters over a few years and, if there were no response, the name would likely be removed.
Mr. Ward said the foundation does not seek any medical information or aggressively match patients with fund-raising campaigns related to their illnesses.
“We don't want to keep grateful patients from supporting our institutions,” Mr. Ward said. “But, like anything else, they have to be asked.”
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