Central Cancer Registry: what is reported and what is confidential

It is the official registry of cancer cases in Puerto Rico, created by law in 2010. If you were diagnosed and told the hospital must report it, this is the law that requires it. It carries three things that matter to a patient: what identifies you is strictly confidential, nobody can compel you to submit to a Registry medical inspection, and the official cancer incidence figures for the Island are those the Registry publishes.

The law imposes no requirements on the patient and does not ask them to enrol: the duty to notify falls on the entities, persons, physicians and institutions handling the case. What gets reported are cases of in-situ or invasive cancer and malignant or benign central nervous system tumours. On the patient’s side, what the law recognises are protections, not procedures.

Information pending verification.

Information pending verification.

1. 1

   Step 1: Nobody can compel you into a Registry inspection

   It is the most direct protection and the law writes it in an article of its own: “None of this Act’s provisions shall be interpreted so as to compel a patient suffering from any of the diseases enumerated in this Act to submit to the Registry’s medical supervision or inspection.” The Registry collects data from your record; it does not acquire a right to examine you.

2. 2

   Step 2: What identifies you is strictly confidential

   The law separates the statistical datum from the datum that points at a person. Information that could identify a particular cancer patient “shall be strictly confidential,” and those who handle it are bound by “confidentiality agreements under which they shall be legally responsible for any breach of confidentiality.” What usually surprises is the duration: “These agreements shall remain in force, even after the employee or person stops working” there.

3. 3

   Step 3: What data is collected

   It is worth seeing the full list, because it is broader than assumed and ends with a limitation. The Registry collects: demographic data on the patient’s age, ethnicity and sex; clinical history data; administrative information, including date of diagnosis and source of information; diagnosis data and related studies; data on the cancer’s characteristic pathology, including location and the stage or extent of the disease; treatment-specific data; follow-up data; and “any other information required by the Registry, for statistical purposes only.”

4. 4

   Step 4: Which cases must be reported

   The law delimits the universe and it is not only cancer in the ordinary sense: reporting covers “each case of in-situ or invasive cancer or of malignant or benign central nervous system tumours.” Benign central nervous system tumours are inside.

5. 5

   Step 5: Why the hospital insists: the fines

   It explains the urgency with which data is sometimes requested of you. “Every entity, person, physician or institution that fails to comply with this Act’s provisions or its regulations shall be sanctioned by the Registry with an administrative fine on a first infraction of three thousand dollars ($3,000) per unreported case, and on subsequent infractions shall be sanctioned with an administrative fine of five thousand dollars ($5,000) per unreported case.” And it adds that the Registry “shall request the suspension of any licence issued by the Department of Health, for a term of no less than six (6) months” for those who fail to comply.

6. 6

   Step 6: If the reporter fails, the Registry goes into the record

   It is a little-known consequence and worth knowing. Whoever has not complied with complete, faithful and timely reporting “for two consecutive quarters and has not demonstrated progress in compliance, shall permit immediate access to the medical records and other documents, and the Registry shall collect the data and demand reimbursement of the expenses incurred in obtaining those cases up to a maximum of $100 per case collected, in addition to the corresponding fines.”

7. 7

   Step 7: The official figures are the Registry’s

   It is a one-line article and it settles arguments about numbers: “The official statistical data on cancer incidence in Puerto Rico shall be that published by the Registry.” We publish no figure or link here because we did not verify the Registry’s publications for this guide.

8. 8

   Step 8: Whoever reports is relieved of liability

   It is the flip side of the obligation and explains why your physician may report without asking your permission: the law relieves of civil and criminal liability every person or institution that provides the information it itself requires. If your concern is what is done with that data, the law’s answer is in the confidentiality articles and in the limitation that additional information is requested “for statistical purposes only.”

There is nothing to apply for: the duty to notify belongs to whoever treats you, and this law’s protections operate on their own. The Registry is in charge of the collection, of training and certifying the personnel who report, and of imposing the fines. The law also requires the Registry to develop an orientation and dissemination campaign about the importance of complete, faithful and timely reporting. If your matter is coverage of a cancer treatment, the complete blood count for cancer patients or a complaint as a patient, those have their own guides here.

• Believing the Registry can summon you to an exam: the law says none of its provisions compels the patient to submit to the Registry’s medical supervision or inspection.
• Thinking your physician’s report is a confidentiality violation: the law requires it and relieves of civil and criminal liability whoever provides the information.
• Assuming only invasive cancers are reported: the law includes in-situ cases and malignant or benign central nervous system tumours.
• Accepting any incidence figure: the law provides the official ones are those published by the Registry.
• Assuming the confidentiality duty ends when the employee leaves: the agreements remain in force afterwards.
• Believing the law opens a route for the patient to correct or exclude their data: it provides none, and we do not invent one here.

These are the government pages this guide is based on.

• Departamento de Salud de Puerto Rico

  Salud

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