HI570 Unit 6 Secondary Use Evaluation Example

Gratitude as a Data Field: A Unit 6 Secondary Use Evaluation of a Hospital Foundation's Plan to Mine Oncology Records for Donors

[Student Name]

Purdue University Global

HI570: Legal and Ethical Issues in Health Information

Unit 6 Secondary Use Evaluation

[Instructor Name]

[Date]

Larchmere Health, its foundation, the proposal and every figure are composite; the regulations and sources cited are real.

The Proposal

Larchmere Health's foundation is raising money for a new outpatient cancer center. Its development director has asked health information management for a monthly file of every patient seen in the oncology service in the previous month, with name, address, age, insurance status, date of service, treating oncologist, diagnosis, stage and a flag for patients in remission. The foundation would use the file to rank patients by likely capacity and gratitude, and to ask oncologists to introduce major-gift officers to their patients during visits. About 2,300 patients a year would appear in the file.

Question One: Does the Fundraising Provision Allow It?

Under the fundraising provision, a hospital may use, or pass to a foundation tied to it, a limited set of information for its own fundraising without patient authorization (45 C.F.R. § 164.514, 2024). The permitted set includes demographic information such as name, address, age and gender; dates of service; department of service; treating physician; outcome information; and health insurance status. The hospital must describe fundraising in its notice of privacy practices, and every fundraising communication must give the patient a clear, simple way to opt out of further appeals, which must be honored.

Measured against that list, most of the proposal fits. Name, address, age, insurance status, date of service, the oncology department and the treating oncologist are all permitted. Outcome information, such as whether treatment ended in remission or death, is permitted, and the rule's commentary expects hospitals to use it mainly to avoid soliciting the families of patients who died.

Two fields do not fit. Diagnosis and stage are not on the list. Department of service may reveal that a patient was seen in oncology, but the specific cancer and its stage are clinical information the provision does not reach. Using them to rank donors would require each patient's written authorization.

The rule lets the foundation know that someone was treated in oncology and by whom, but not what cancer they had or how advanced it was.

Question Two: What Would Authorization Add?

The foundation could seek authorization for diagnosis and stage, but the ask would be awkward. An authorization must be specific, signed and revocable, and the hospital could not condition treatment on it (45 C.F.R. § 164.508, 2024). Asking patients during cancer treatment to sign a form allowing their diagnosis to be used for fundraising would likely produce few signatures and some distress. The practical answer is that the feed should drop those two fields.

Question Three: Is It Right?

Lawfulness settles less than it seems. Grateful patient fundraising raises ethical questions that the Privacy Rule does not address. Physicians surveyed at an academic center reported concern that soliciting patients could strain the therapeutic relationship and make patients feel their care depended on giving (Wright et al., 2013). A group of clinicians, ethicists and development officers later recommended that physicians not solicit gifts directly, that patients be approached only after an appropriate interval, and that clinical vulnerability guide timing (Collins et al., 2018).

The proposal raises each of those concerns. Oncologists introducing gift officers during visits places the request inside the clinical relationship. Patients in active treatment are dependent on their physicians in a way that makes refusal feel risky. A monthly feed means patients would be identified weeks after diagnosis, often before they know their prognosis. And a remission flag would mark the patients most likely to feel grateful, at the moment their gratitude is freshest, which is efficient fundraising and uncomfortable ethics.

AHIMA's ethical code expects the profession to put information only to legitimate uses and to advocate for the people the information describes (American Health Information Management Association [AHIMA], 2019). Supplying the feed as proposed would satisfy the first and fail the second.

Recommendation

Health information management should support a narrower version.

1. Provide only the permitted fields: name, address, age, insurance status, date of service, department, treating physician and whether the patient is living.

2. Exclude diagnosis, stage and the remission flag.

3. Wait at least six months from the first oncology visit before a patient appears in the file, and exclude patients in active treatment.

4. Keep physicians out of solicitation. Oncologists may tell the foundation which patients have expressed a wish to give back, but only when the patient raised it.

5. Make the opt-out visible: every appeal names the opt-out method, and an opt-out received by any channel is entered in the record within five business days and suppresses that patient from all future files.

6. Review the arrangement annually with the privacy officer and the ethics committee.

Who Holds the File

The data flow itself also needs limits, whatever fields it carries. The foundation is an institutionally related foundation, so the hospital may disclose fundraising information to it, but the file should travel by secure transfer, sit in a restricted folder accessible only to named development staff, and be deleted when the next month's file replaces it. Gift officers should not copy fields into the foundation's donor database beyond name, contact details and the opt-out status; the treating physician's name, in particular, should stay out of donor profiles that wider staff can browse. Health information management should keep a log of each monthly disclosure and audit the foundation's handling once a year. These steps are not required word for word by the fundraising provision, but they apply the minimum necessary idea to a use that will repeat every month for years.

What the Narrower Version Costs

The foundation will lose some precision: without diagnosis and stage it cannot target by cancer type. It may also raise less in the short term, since the most grateful patients will be reached later. The evaluation accepts that cost, because the alternative trades on vulnerability in a way that could damage trust in the oncology service itself.

How the Decision Will Be Explained

The development director will hear a partial yes, so the reply should lead with what the foundation can have and when, then explain each exclusion in one sentence with its reason. Framing the conditions as protection for the cancer center's reputation, not as obstacles, makes them easier to accept.

Limits

State law may impose stricter limits on fundraising uses of health information, and the foundation's agreement with the hospital should be reviewed by counsel. The evaluation also does not address marketing communications, which follow different rules.

References

American Health Information Management Association. (2019). AHIMA code of ethics. AHIMA.

45 C.F.R. § 164.508 (2024). https://www.ecfr.gov/current/title-45/subtitle-A/subchapter-C/part-164/subpart-E/section-164.508

45 C.F.R. § 164.514 (2024). https://www.ecfr.gov/current/title-45/subtitle-A/subchapter-C/part-164/subpart-E/section-164.514

Collins, M. E., Rum, S., Wheeler, J., Antman, K., Brem, H., Carrese, J., Glennon, M., Kahn, J., Ohman, E. M., Jagsi, R., Konrath, S., Tovino, S., Wright, S., & Sugarman, J. (2018). Ethical issues and recommendations in grateful patient fundraising and philanthropy. Academic Medicine, 93(11), 1631-1637. https://doi.org/10.1097/ACM.0000000000002365

Wright, S. M., Wolfe, L., Stewart, R., Flynn, J. A., Paisner, R., Rum, S., Parson, G., & Carrese, J. A. (2013). Ethical concerns related to grateful patient philanthropy: The physician's perspective. Journal of General Internal Medicine, 28(5), 645-651. https://doi.org/10.1007/s11606-012-2246-7