Consent under disaster conditions: what field records can and cannot support

Two settings, two consent environments

CASSM funds deployments across settings that differ materially in how consent is obtained and in what that consent can reasonably be taken to mean.

In school-based outreach, consent is documented in two stages: a school-administered process completed in advance, and intake at the point of care. Parents or guardians have time to read, to decline, and to ask questions. The child's participation is not contingent on immediate need. Documentation is legible, and the conditions surrounding it are unremarkable. Further interviews are conducted with the individuals' expressed consent.

Disaster deployment is not comparable. A patient presenting at a field clinic after a Category 5 hurricane may have lost their home, their medication, and access to every alternative source of care in the parish. They are asked to consent, while standing in a queue, to a free service for which no substitute is available. This is not to suggest that presentations at Black River were predominantly life-threatening, they were not. Most concerned chronic disease management, interrupted medication access, and routine care deferred by the hurricane. But constrained choice does not require acute peril to be constrained. The form may be identical across both settings. The circumstances in which it is signed are not.

What the current consent covers

The intake consent used at CASSM-funded deployments addresses the collection and use of personal and medical information for diagnosis, treatment, and follow-up care. It states that information will be kept confidential and shared only with authorized medical and public-health partners, references the Jamaica Data Protection Act, and provides that consent may be withdrawn at any time.

The intake instrument itself was developed with clinical input from participating practitioners, including Dr. Franz Collins. The clinical content which conditions are captured, how they are recorded, and what a practitioner is asked to document was specified by clinicians. CASSM's contribution was the document design and, subsequently, a digital version of the form. That division matters for the questions this paper raises: CASSM built the form, but it did not decide what the form asks a clinician to assess.

A further consideration arises from the practitioner base at these deployments, which spans Jamaica and the United States. Records are designed to comply with the Jamaica Data Protection Act as the governing framework in the operating jurisdiction, while applying safeguards aligned with standards familiar to US practitioners. This is a design choice rather than a compliance requirement, given that US health privacy law does not extend to a Jamaican organization operating clinics in Jamaica; adopting a recognized standard provides visiting practitioners with a clear basis for understanding how the records they contribute to will be handled. Whether alignment of that kind carries any weight in resolving the research-use question is a separate matter, and one on which CASSM makes no assumption.

What it does not do is authorize secondary use for research or publication of findings derived from the records. That is not a defect in the form, but it is a description of what the form was written to do. Clinical consent and research consent are distinct instruments addressing distinct purposes, and the presence of one does not imply the other. The concern is well-documented: participants in clinical settings routinely conflate research participation with treatment, a confusion that disclosure alone does not reliably resolve (Appelbaum et al., 1982; Henderson et al., 2007).

CASSM therefore does not seek or treat these records as available for publication in identifiable form. Whether they can support anything else is the open question.

Whose records these are

The question of research use cannot be separated from the question of custody, and custody does not sit with CASSM.

With manual intake, patients carry paper forms between stations, and the treating physician retains completed records. The physician is therefore the custodian. Clinical services at CASSM-funded deployments are delivered by MobiCare Medical Centre, with volunteer practitioners working within that clinical structure, and the records generated are theirs and the individual practitioners' rather than CASSM's. CASSM funds deployment and coordinates the site, logistics, and patient flow. It does not hold the resulting records and has no independent claim on them.

This is the correct arrangement rather than a problem to be solved. Clinical records should sit with clinicians. But it means that any research use of this material is a request CASSM would make of the record holders, subject to their agreement and their own professional and legal obligations, rather than a decision available to CASSM. Nothing in this paper should be read as asserting otherwise.

It also leaves procedural questions genuinely open. Who is the data controller under the Jamaica Data Protection Act in a deployment funded by one organization, delivered by another, and documented by individual practitioners? What obligations attach to each party? Whether records held across multiple practitioners' offices could be assembled for any purpose, and by whose authority. These difficulties are characteristic rather than particular. Physicians working in disaster response report the absence of systematic mechanisms for patient information sharing as a recurring impediment, affecting both individual care and population-level assessment (Sauer et al., 2023).

A digital intake form and the tablets to run it have been prepared but not yet used in the field. Every deployment described in CASSM's published accounts operated on paper. Digital intake would consolidate custody, resolving some of the questions above while raising others concerning storage, access control, and retention. The decision to adopt it rests with the clinical provider rather than with CASSM alone. Recording that it is built but untested is more useful than describing an intention.

The question for investigation

Identifiable use and de-identified aggregate use are not the same question, and CASSM has not investigated where the boundary sits under Jamaican law. Provisions or established practice may exist; CASSM has not examined the position and does not assume either way.

The question is whether properly anonymized aggregate reporting, counts of presenting conditions, distribution of unmet need, and service utilization by station falls outside the scope of data protection requirements, and what standard of de-identification would be required for that to hold. That is a matter for qualified legal analysis rather than organizational assumption, and CASSM has not yet obtained it.

The assumption should not be that anonymization is straightforward. De-identification has been shown to offer weaker protection than commonly supposed, and re-identification from ostensibly anonymized health data is empirically demonstrated rather than theoretical (Ohm, 2010; El Emam et al., 2011). In a small parish population, combinations of age, sex, presenting condition, and site may be sufficient to identify even when no name is recorded. Whatever the legal position turns out to be, that technical difficulty applies, and establishing the boundary is a prerequisite to any research use of field records.

What this means for measurement

CASSM has stated elsewhere that its published figures are outputs rather than outcomes, and that closing that gap requires measures of what changed for the people served. This paper identifies a constraint on that program which should be stated alongside it.

The distinction that matters is between service-delivery data and patient data. Counts of patients seen, sessions delivered, prescriptions filled, and stations staffed are operational records of CASSM-funded activity. They implicate no patient consent and are CASSM's to report. Anything describing what happened to an individual patient is clinical, held by the treating practitioner, and bound by the consent under which it was obtained.

Applied to the measures CASSM has said it needs: a defined denominator is a population estimate and requires no patient data at all. Pre- and post-session instruments in schools could be designed to be anonymous from the outset, with institutional consent obtained in advance rather than retrospective consent from patients. Referral completion is the measure genuinely constrained, since it requires following named individuals beyond the point of care. CASSM's alignment with Target 3.8 is therefore claimed at the level of access provided rather than health outcomes achieved, and the consent position described here is one of the reasons that limit exists rather than an unrelated matter.

Why this is not simply a paperwork problem

It would be straightforward to add a research consent checkbox to the intake form and treat the matter as resolved for future deployments. It is less clear that doing so would be adequate. International guidance on research in low-resource settings pays particular attention to circumstances in which participation may be difficult to decline and to the adequacy of consent obtained when alternatives are absent (CIOMS, 2016). Consent given in need to the only available provider carries a different quality from consent given at leisure with alternatives at hand, and a checkbox does not alter that. Any research consent adopted in these deployments must be designed for the circumstances in which it is actually sought and be refusable in practice, not only in principle. It will also have to be agreed with the clinical provider whose practitioners would be seeking it.

What follows

Before field records from CASSM-funded deployments could support research of any kind, several questions would need answers that CASSM is not positioned to supply.

One distinction should be drawn first, because it separates a near-term question from a longer one. Reviewing records to establish whether an intake instrument is working, whether fields are being completed, and whether the form captures what clinicians need it to capture is an evaluation of a tool. Analyzing what those records say about patients, presenting conditions, or unmet need is research. The two are commonly governed differently, and CASSM does not assume that what applies to one applies to the other.

1. Whether the record holders would agree to either use, which precedes everything below and is theirs to decide.
2. Whether the Jamaica Data Protection Act permits de-identified aggregate analysis of clinical records collected in humanitarian deployments, and at what standard of de-identification.
3. Where data controllership sits when a deployment is funded by one organization, delivered by another, and documented by individual practitioners, and how that would change if CASSM were to host a digital intake system on the provider's behalf.
4. Whether ethics review or Ministry clearance is required for either evaluation or research use, and through which body it would be sought.
5. What form of research consent is appropriate to disaster conditions, and whether a single instrument can serve both disaster and school settings.

CASSM has not yet put these questions to the Ministry of Health and Wellness or to any research ethics body, and intends to do so. The outcome will be recorded here.

None is answerable by CASSM alone. Each requires qualified legal or research-ethics input, and several require the agreement of parties other than CASSM. The questions are recorded here so that the limitation is visible in advance of any research output rather than discovered afterward.

A separate observation warrants stating plainly, because it bears on how any future analysis is framed. Many of those presenting had lost family members, homes, documents, and livelihoods. That circumstance is evident and requires no assessment to describe. It is not, however, a clinical finding, and CASSM draws no conclusions about psychological presentation across the patient population based on observation alone. The distinction between describing circumstances and characterizing a population's health status is one this organization intends to maintain.

See What remains unanswered: the measurement gap in small-scale humanitarian deployment for the related problem of measurement in CASSM-funded deployments, and Alignment with the Sustainable Development Goals for how these limits bear on what CASSM claims.

References

Appelbaum, P. S., Roth, L. H., & Lidz, C. W. (1982). The therapeutic misconception: Informed consent in psychiatric research. International Journal of Law and Psychiatry, 5(3–4), 319–329. https://doi.org/10.1016/0160-2527(82)90026-7

Council for International Organizations of Medical Sciences. (2016). International ethical guidelines for health-related research involving humans (4th ed.). https://doi.org/10.56759/rgxl7405

El Emam, K., Jonker, E., Arbuckle, L., & Malin, B. (2011). A systematic review of re-identification attacks on health data. PLOS ONE, 6(12), e28071. https://doi.org/10.1371/journal.pone.0028071

Henderson, G. E., Churchill, L. R., Davis, A. M., Easter, M. M., Grady, C., Joffe, S., Kass, N., King, N. M. P., Lidz, C. W., Miller, F. G., Nelson, D. K., Peppercorn, J., Rothschild, B. B., Sankar, P., Wilfond, B. S., & Zimmer, C. R. (2007). Clinical trials and medical care: Defining the therapeutic misconception. PLOS Medicine, 4(11), e324. https://doi.org/10.1371/journal.pmed.0040324

Ohm, P. (2010). Broken promises of privacy: Responding to the surprising failure of anonymization. UCLA Law Review, 57, 1701–1777.

Sauer, L. M., Resnick, B., & Rutkow, L. (2023). Information challenges associated with accessing and sharing of patient information in disasters: A qualitative analysis. Health Security, 21(6). https://doi.org/10.1089/hs.2023.0058