Case 13: The Eastern Health patient advisory council for cancer care
- Case 1: The public voice informs HIV service planning at Vancouver Coastal Health
- Case 2: Engaging Canadians in the development of a mental health strategy for Canada
- Case 3: Campobello Island health and well-being needs assessment (2008-2009)
- Case 4: Québec health and welfare commissioner's consultation forum
- Case 5: The CommunityView Collaboration
- Case 6: Shared challenge, shared solution: Northumberland Hills Hospital's collaborative budget strategy
- Case 7: Our health. Our perspectives. Our solutions: Establishing a common health vision
- Case 8: The use of a holistic wellness framework & knowledge networks in Métis health planning
- Case 9: Canadian Blood Services' stakeholder engagement for organ and tissue donation
- Case 10: Human tissue biobanking in B.C
- Case 11: Share your story, shape your care — Engaging Northwestern Ontario
- Case 12: Consulting Ontario citizens to inform the evaluation of health technologies: The citizens' reference panel on health technologies
- Case 13: The Eastern Health patient advisory council for cancer care
- Case 14: The Toronto food policy council: Twenty years of citizen leadership for a healthy, equitable, and sustainable food system
Province of Newfoundland
Lisa Adams, RN, BN, BSc, MSc, PhD ©, CHE, CPMHN
Project Leader- Cameron Inquiry
In the summer of 2005, Eastern Health in Newfoundland and Labrador identified a potential problem in the accuracy of hormone receptor tests conducted for breast cancer patients. A review was undertaken to identify all breast cancer patients with negative estrogen receptor (ER) results who had been tested between 1997 and 2005. This review included breast cancer specimens from living and deceased patients. Specimens were sent to the Laboratory in Mount Sinai Hospital in Toronto, Ontario, for re-testing.
The Commission of Inquiry (COI) on Hormone Receptor Testing was created to facilitate this process, and in 2009, its report — authored by Justice Margaret Cameron — was released. This report outlined many recommendations to address issues with estrogen and progesterone hormone receptor (PR) testing and adverse health event management within the Newfoundland and Labrador health care system. Although not included in the report, the need for a patient advisory council to help oversee the implementation of the report's recommendations was identified by the Eastern Regional Health Authority. This volunteer patient advisory council included the patients, families, surviving spouses, breast cancer support and advocacy groups, and other significant stakeholders who had experienced and/or were involved in the hormone receptor testing events.
A systematic literature review was undertaken to determine how best to establish a patient advisory council and identify best practices for the council to follow. As the topic of ER/PR hormone receptor testing and the subsequent medical errors had such a wide-reaching effect, it was felt that provincial representation was needed so that all patients and families involved could have a voice in determining how to prevent a similar event from happening again. The formation of a patient advisory council also intended to help restore trust and confidence in the health care system.1
As this was the first patient advisory council formally developed by Eastern Health, an outside model (developed by Aurora Health) was used as a reference.2 In addition to this model, the principles outlined by the Citizens Council of the National Institute of Health and Clinical Excellence in the United Kingdom were also adapted to help guide the institution of this council.3 A draft Terms of Reference was developed — and later modified and approved — based on input from the council members. The membership and objectives of the council also evolved and were refined as the initial meetings took place and the roles and responsibilities of the participants were clarified.
This council was set up as a voluntary group interested in the delivery of cancer care in the province of Newfoundland and Labrador. It was chaired by the Chief Executive Officer of Eastern Health, the Vice President of Quality, Planning and Patient Safety, or the Vice President of the Cancer Care Program for Eastern Health.
Council members were selected using convenience sampling. A core group of health care clinicians and administrators from Eastern Health identified key stakeholders related to the mandate of this council. The events of the COI received a great deal of media coverage, and the identification of key players was not difficult. Stakeholders included cancer support members/leaders, a Canadian Cancer Society representative, patient care advocates, breast cancer survivors, a pastoral care individual, and health care administrators. To ensure provincial representation, all other regional health authorities were invited to identify someone from their geographical area that could participate.
Each patient advisory council meeting included an open discussion of the recommendations being addressed. A total of 5 meetings have occurred to date. The council has also discussed the Memorandum of Settlement between legal counsel and Eastern Health, as well as issues such as and the establishment of academic awards related to cancer research and erecting a monument in memory of those who died because of the hormone receptor testing errors. At each meeting, all council members are provided with an overview of the status of all recommendations, including those that have been completed, those nearing completion, and those not yet started. Barriers and challenges encountered during the process of implementing the recommendations are also mentioned.
The patient advisory council meetings are meant to be highly interactive forums where all members have the opportunity to contribute. A draft report of the minutes and agenda are circulated to all council members for their review prior to the next meeting. Once approved, minutes are posted on the Eastern Health website for public viewing. The council is mandated to meet four times per year, with meetings lasting between two and four hours.
Outcomes and impact
The 2005 review posed an unforgettable and potentially unprecedented task for Eastern Health, one that challenged the very core of health care delivery for cancer care patients of Newfoundland and Labrador. The loss of public confidence in the province's health care system and the questions regarding its accountability permeated every corner of our society. For some of the patients and their families and loved ones, this adverse event was a life-changing one. Helping to form the Patient Advisory council was part of the healing experience for some of them, providing the opportunity to help oversee the implementation of the recommendations in Justice Cameron's report and to transform cancer care delivery in the province.
The patient advisory council was initially intended to ensure and oversee Justice Cameron's recommendations, but as the council was refined and strengthened, it became apparent that the council could play a role in overseeing the delivery of cancer care in Newfoundland and Labrador.4
To date a total of nine meetings have taken place. Issues of transparency, accountability and communication are key themes that emerged from the COI on Hormone Receptor Testing report, but the very existence of the patient advisory council was just one way that these principles have been entrenched.
To help ensure and increase transparency of the topics and discussions of the patient advisory council, a website for the public was developed that provided information on the council's activities.
The biggest challenge faced by this council was overcoming the broad geographical layout of the province of Newfoundland and Labrador. Face-to-face meetings provide a sense of authenticity and presence that facilitates strong working relationships and a productive environment. As a result, while the technology of teleconferencing has helped to establish methods of communication and contact, members of the council are also funded to travel to St. John's on a yearly basis to meet in person. The logistics and costs of this travel have been a challenge.
A partnership between patients, families and health care organization has led to many changes, including the development of physician champions, numerous clinical quality safety leaders, patient navigators, lab audit schedules, clinician rounds, leadership education and, most importantly, a Patient Advisory Council to help ensure these measures were completed. For many, the Council has represented a welcome change, offering increased accountability, close adherence to patient and professional standards of practice, and a venue for open communication. These efforts have aimed to redress the pain and unanswered questions from the past, while strengthening the core of the provincial health care system and embodying Eastern Health's vision of "Healthy Patients, Healthy Communities."
- Footnote 1
Tharp, B. & Hollar, D., "Engaging Community Members in Health Policy Processes: a Mississippi Example," Journal of Health and Human Services Administration 24.4 (2002): 388-400.
- Footnote 2
Leonhardt, K., Bonin, D. & Pagel, P., "How to Develop a Community-based Patient Advisory Council" (2008) (retrieved February 10, 2010).
- Footnote 3
National Institute for Health and Clinical Excellence (UK), Citizens Council (retrieved February 10, 2010).
- Footnote 4
Johnson, B., Developing and Sustaining Patient Safety and Family Involvement in Safety (retrieved February 20, 2010).
- Date modified: