In 1992, the Supreme Court of Canada affirmed the principle that, although the binder and paper of the patient’s health record belong to the hospital (or in the case of a private office, the doctor), the information in the record belongs to the patient or the patient’s legal guardian. This legal reality, however, is typically not reflected in day-to-day practice, particularly for health records on hospital inpatient units. Most patients and professionals still believe that opening the chart to the patient is granting a privilege rather than facilitating a right. This is understandable given the custom of using the chart as the means of interprofessional communication rather than as a purely objective health record.

In 2000, members of the parent advisory committee at BC’s Children’s Hospital (part of Children’s and Women’s Health Centre of BC) were frustrated by the difficulties and delays in accessing their children’s charts and decided to press for more open access. They expressed their request in a letter to the hospital administrator.

“There is little doubt that the zeitgeist of our society, public policy, and the intent of the access to information law supports the principle that what is in the chart belongs as much to the patient, and or family, as to the health professionals…we ask you to consider setting up a task force…to find ways of dealing with third-party confidentiality, while putting in place policies and procedures that allow the families (of patients who are minors) or youths, who are interested in being part of the daily team communication, to have timely access to charts. We hope and trust that, as leaders in the field of child health, you will be willing to take up this challenge.”

Children’s and Women’s Health Centre responded to this request by striking a task force consisting of physicians, staff from different disciplines, and parent advisory committee representatives. This task force proceeded under the guidance of one of the authors of this article (Dr Smith), a senior medical director who initially believed his task as chair was relatively simple and would be completed within the course of 2 or 3 months. The reality was much different. The task proved challenging and took almost 18 months of monthly meetings

Establishing terms of reference

The first step was to gain agreement on the terms of reference for the task force. From the beginning there was a sense that the very composition of the task force was making change: health professionals and consumers (four members of the parent advisory committee, not just one token representative) were intent on working collaboratively to change policy. There was, inevitably, initial discomfort as members took their positions. Agreement was eventually reached, but not without extensive discussion, on the purpose and responsibilities of the task force.

Purpose

• To recommend policies that will allow patients or parents/legal guardians, while in hospital, open access to their child’s/own hospital charts without delays.
• To recommend a process for ensuring that the policy is implemented consistently across the hospital.

Responsibilities

1. Identify and address barriers to open access to hospital charts such as:

• Legal issues relating to third-party confidentiality arising from the provincial Freedom of Information and Protection of Privacy Act.
• Child protection concerns.
• Historical views of the chart as the exclusive property of health professionals.
• Concerns regarding the integrity and safety of the chart contents.

2. Develop a draft policy and procedure concerning patients’ or parents’/legal guardians’ access to their chart while in hospital.

3. Establish agreement for this policy and procedure with the major clinical groups in order to maintain consistency of practice throughout inpatient units.

The task force began by conducting a survey to learn more about potential barriers to chart access and current thinking in the hospital, and to raise awareness among physicians, staff, and administrators about chart access. Interestingly, although the survey was widely distributed, most of the respondents were physicians, and most expressed an open-mindedness regarding chart access.

Developing the policy

As soon as work on the policy began in earnest, a multitude of issues surfaced. Some complexity arose from the difficulty of trying to balance opposing principles of freedom of information and protection of third-party privacy, as mandated in the Freedom of Information and Protection of Privacy Act in British Columbia. Translating legislation into hospital policy proved to be a daunting task.

Previously, a patient’s request to see the chart had been referred to the attending physician or freedom of information and protection of privacy (FOIPP) officer, which in either case created unacceptable delays in the eyes of the patients concerned (legally, the delay could extend to 30 days.) The common practice of making access difficult for the patient was given legitimacy by the legal requirement that the hospital protect some forms of third-party information that might be contained within a chart. Administratively this policy was also cumbersome. The task force wrestled with the two competing principles of giving patients access while at the same time protecting the privacy of third parties.

The consumer voices challenging the emphasis on privacy declared that there is an equally powerful legal requirement for access to the more than 95% of charts that contain no protected third-party information (an estimate suggested by the officer responsible for FOIPP). Those speaking on behalf of patients declared that the information in the chart could, and should, be offered to the patient in a timely manner. They pointed out that the patient has a responsibility to share in his or her health decisions, which is acknowledged in the requirement of informed consent.

What exactly constitutes “protected third-party information” in terms of the law of the province became a problem of such inscrutability that the task force chair invited Mr David Flaherty, the first privacy commissioner of British Columbia and a noted expert on health information, to assist the task force. Theoretical understanding, however, proved of little help in resolving the practicalities. In the end, the only way to resolve this was for the task force and the hospital administration to accept that open access to the chart would involve a small element of risk. The risk came with shifting from the established position emphasizing protection of the very few charts containing potential third-party restricted information to a new position emphasizing timely access to health information for the patients who wish to participate more fully in their care. Later, information sheets, distributed as part of the policy implementation, gave this direction to staff: “This policy is meant to make it easy for you to give the chart in circumstances (over 95% of the cases) where there are no known privacy issues. If you have serious doubts about third-party information then inform the requester that you will need to call the hospital’s FOIPP officer before giving the chart.”

Challenges

Defining restricted third-party information was just one of the challenges that the task force faced as it attempted to write a new policy. A sample of some of the many other issues and questions the task force grappled with follows:

Giving patients access to their charts will change what professionals are prepared to document.
Task force response: There is a professional obligation to document. What and how one documents must be relevant to patient care, accurate, and objective. One should document with the understanding that professional opinions are not protected third-party information. 

In a children’s hospital that also treats youths, who has the legal right to access the chart?
Task force response: The person competent to sign consent has the legal right to access. 

What about the situation where a 15-year-old has given information to the hospital in confidence and the parent, who is the person consenting to treatment, wants the chart?
Task force response: Provide the following guidance to staff: The information in the chart belongs to the patient, unless that person is deemed not capable by the attending physician. The Infants Act specifies no absolute age of competence. Therefore, if the parent of a youth asks to see the patient’s chart:

• Explain to the parent that the chart information belongs to the youth.
• Ask the parent to wait outside the youth’s room.
• Take the chart into the room.
• Explain to the youth that information he or she has given health professionals may have been recorded in the chart.
• Ask if the youth is willing to have the parent see the chart.
• Respond accordingly.

Even if the parent has signed consent to treatment, the youth has the right of privacy. 

Is a report or letter from a health professional who is not a member of staff at this hospital protected third-party information?
Task force response: Strictly speaking, it is not protected third-party information. If you are concerned about the contents of a report, call the FOIPP officer for guidance before giving access to the chart.

How do we prevent patients from taking the chart away or changing things in it? 
Task force response: The hospital has the responsibility to maintain the integrity of the health record. Before the chart is given to the person legally entitled to it, he or she must sign a sheet of guidelines developed along with the policy. These guidelines clearly indicate the reader’s responsibilities with regard to the use and safekeeping of the chart. While we recognize that this is no guarantee, there is similarly no guarantee that the health professionals and students with access to the chart will maintain its integrity. Some measure of trust is necessary.

In addition, various concerns relating to child protection were dealt with in the draft policy by restricting access to the chart in special circumstances, including those where there are legal issues.

With due diligence and extensive, sometimes acrimonious debate, the task force completed the draft policy that was subsequently reviewed by the hospital’s Quality of Care Committee, Medical Advisory Committee, and Professional Advisory Committee before being approved by the Executive Committee. The policy (see Figure PDF [9] [Requires Adobe Acrobat]) came into effect throughout the hospital, for all programs and departments, on 1 July 2002.

Implementating the policy

The new policy was announced in a site-wide e-mail and an article in the staff newsletter. Members of the task force undertook to attend various department meetings to explain the policy and comment on concerns regarding implementation. The parent advisory committee, which had been kept apprised of the progress of the task force by its representatives, agreed to delay advertising the new policy to patients’ families for a few months. This time was needed to inform and educate staff about the policy. As expected, there was wholehearted acceptance and willingness to “work things out as they come up” on the part of some health care professionals, and equally wholehearted resistance on the part of others. Physicians and staff were invited to submit their questions and “nightmare scenarios” to the task force secretary. These were then organized into a series of information bulletins set up in a question-and-answer format. They were sent, one at a time, to all units and departments in the hospital. As well, physicians and staff were given this advice:

“We are blazing a new trail here with the understanding that the information in the chart belongs to the patient. There will be some rough patches as we make the change from the old ways to the new, but, in time, and with experience, we will smooth them out. Remember when we said fathers couldn’t be in the delivery room for the birth of their child? Then too we had lots of reasons why this was not going to work.”

Since implementation, some departments have needed to review their internal practices and write guidelines for their staff, but, somewhat surprisingly, no serious difficulties arising from the new policy have come to the attention of the task force chair. An unplanned but welcome effect of the new policy has been increased awareness that professional opinions or comments recorded in the health record are not protected information and that open access can facilitate more direct communication between patients, their parents, and health care providers.

 Acknowledgments

This article is based on work done by a task force initiated by Partners in Care, the parent advisory committee to BC’s Children’s Hospital, under the auspices of Sharon Toohey, currently president of Children’s Hospital and Sunnyhill Health Centre for Children. The authors would like to acknowledge the vision and support of both of the above and commend all members of the task force for their determination to see their vision realized. 

 Competing interests
None declared.

Edna Durbach, Ed.D, and Derryck Smith, MD 

Dr Durbach has retired from her position of director of Patient Education at BC’s Children’s Hospital and is currently a partner in Get it Write, a company specializing in patient education materials. Dr Smith is head of the Department of Psychiatry, BC’s Children’s Hospital, Vancouver.