The British Columbia Schizophrenia Society (BCSS) advocates for individuals and families affected by schizophrenia and other treatable severe and persistent mental illnesses.
BCSS receives a large number of requests about FIPPA from the families we serve. FIPPA’s interpretation and application on the collection, use and release of information are of particular importance. This is because the symptoms of severe and persistent mental illness, especially during psychotic episodes, often includes an inability to recognize that one has an illness, hallucinations, paranoid delusions or other thought disorders, which may be about family members and/or other caregivers. These symptoms often interfere with an ill person’s ability to help convey, share, and release relevant and/or adequate information.
Families are often in a position of having to provide collateral information to treating professionals, but sometimes must do so in confidence for safety reasons. Family members also provide assistance in care planning and with post discharge requirements – medication management, relapse signs, handling symptoms, etc. However, many families have reported to BCSS that some clinicians respond to requests for this vital information – allowed by FIPPA – with a phrase such as: “I’m sorry, confidentiality laws preclude me from giving you this information since your son/daughter has not consented to it.”
BCSS has held sessions with the Office of the Information and Privacy Commissioner of BC to try and assist our staff and families with this matter. However, it is clear that many clinicians are not well-informed about FIPPA’s provisions and continue to withhold information from families that is vital to the ongoing health and wellbeing of patients with schizophrenia.
In short, BCSS is satisfied with FIPPA, but strongly believes that ongoing education of clinicians is critical for families supporting those with severe and persistent mental illness.
In the review, we request that no changes be made in the sections specified below. In addition, we ask that no changes in the interpretation of FIPPA be made that alter the interpretation of the document known as Appendix 13 in the Guide to the Mental Health Act,“ Freedom of Information and Protection of Privacy Fact Sheet,” in which helpful clinical examples are provided.
A. Sections of FIPPA that affect caregivers and family members of people living with severe and persistent mental illness, and that some clinicians need to be better informed about include:
1. Indirect Collection of Information
Example: When a patient with a severe mental illness, such as schizophrenia, provides information about their condition to a health care provider, they may not provide all the relevant information due to stigma about their illness, symptoms of their illness, including anosognosia, memory problems, thought disorder, delusions, cognitive impairments, or for other reasons. Families, caregivers, and others must then be able to provide necessary collateral information to clinicians without the person’s consent. Most clinicians understand this requirement and know that patient prognosis is better if family is involved in ongoing care.
s. 27 (1):A public body must collect personal information directly from the individual the information is about unless (a.1) the collection of the information is necessary for the medical treatment of an individual and it is not possible (i) to collect the information directly from that individual …
2. Confidentiality of Information Provided by a Third Party (e.g., Family Member) to a Health Care Professional
If a parent of an adult child discloses sensitive information or concerns regarding increasingly harmful delusions, and asks the clinician to keep their disclosure confidential from the patient, must the clinician comply? Under FIPPA s. 22(2)(f), it appears that confidentially is protected.
However, some clinicians believe they are bound by FIPPA to provide this confidential information to the patient. This can and does have very detrimental effects on the relationship of the ill person with family members, who are usually the patient’s primary support. Breaching confidentially can also be dangerous as the patient can turn on the family. We believe clinicians should be informed that divulging confidential family concerns to the patient is a breach of FIPPA. The relevant sections which BCSS wants retained are:
“Disclosure harmful to individual or public safety”
s.19(1) The head of a public body may refuse to disclose to an applicant information, including personal information about the applicant, if the disclosure could reasonably be expected to
(a) threaten anyone else’s safety or mental or physical health, or …
“Disclosure harmful to personal privacy”
s. 22(1) The head of a public body must refuse to disclose personal information to an applicant if the disclosure would be an unreasonable invasion of a third party’s personal privacy.
(2) In determining under subsection (1) or (3) whether a disclosure of personal information constitutes an unreasonable invasion of a third party’s personal privacy, the head of a public body must consider all the relevant circumstances, including whether:
(f) the personal information has been supplied in confidence…
3. Disclosure of Information on a Need to Know Basis
Families and others involved in the person’s support and care need information from the clinician to assist in the recovery of the patient, even if the patient does not consent to the release. Important information for continuity of care includes medication routines, signs of relapse from the patient’s file, housing options discussed in the file, crisis management, etc. FIPPA allows for this information to be released without consent to ensure continuity of care and for health care purposes. It is important that this provision and its interpretation remain unchanged.
FIPPA commentary states:
“If a client’s personal information was collected for health care purposes, public bodies [hospitals, regional health authority clinics, etc.] may release necessary information to third parties for “continuity of care.” This means public bodies may disclose personal information to healthcare professionals, family members, or to other persons, such as friends and relatives, involved in a client’s care for the purposes of that care. The release of the information must be in the best interests of the health of the client.” Case examples are provided. (See page 120 of “Freedom of Information and Protection of Privacy Fact Sheet, Releasing Personal Health Information to Third Parties,” Ministry of Health, Information and Privacy Records Branch, effective 2004, in Guide to the Mental Health Act, Appendix 13, 2005).”
s. 32 A public body may use personal information in its custody or under its control only
(a)for the purpose for which the information was obtained or compiled, or for a use consistent with that purpose.
This provides the necessary authority to support a patient who does not or cannot consent to the release of information necessary to serve their best interests. We definitely do not want a change in this provision or its interpretation.
B. Education of BCSS Board, Staff and Members
In order to find answers to the many questions BCSS receives about FIPPA issues, an education session took place last fall titled ‘Come Together: Understanding Privacy and Information Legislation in Relation to the Mental Health System’ with the Office of the Information and Privacy Commissioner of BC. Since then, we have continued to work with the Office of the Information and Privacy Commissioner of BC to further help our staff and families work within BC’s privacy legislation to care for their loved ones.
C. Conclusion and Recommendations
BCSS has concluded that the difficulty some BC families face in terms of information collection and release is not with FIPPA itself. In fact, FIPPA can be very helpful, but due to misinformation or lack of sufficient training, some clinicians have misinterpreted FIPPA.
BCSS therefore recommends improving education on FIPPA in relation to mental health for all clinicians. This is a large task that would require collaboration between the Office of the Information and Privacy Commissioner, Ministry Privacy Branches, colleges of disciplines, educational facilities and the Health Authorities.
One alternative would be to task the Office of the Information and Privacy Commissioner with this undertaking. The Office has already developed excellent materials, including a manual and specific areas (e.g., people in crisis) that could be shared with other responsibility centres. A collaborative relationship between the Office and other responsibility centres could help achieve the aim of clinicians correctly understanding the applicable aspects of the legislation.
Some clinicians may not be aware of or following FIPPA rules regarding information to families. Families can then make complaints through established avenues. It is, therefore, also important that those handling complaints be very knowledgeable about FIPPA.
Finally, when dealing with complex legislation such as this, there will often be questions even when experienced people are involved. Therefore, the consultation service of the Office of the Information and Privacy Commissioner of BC should be made widely-known to clinicians.