Programs & Activities

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Education

Research

Education

Enhancing the Patient Voice in Ontario's Health Care Boards

Funded by the Ontario Trillium Foundation, PAC has organized this project to help Ontario health care board members bring the patient perspective to their board deliberations. PAC volunteers (who are experts in several facets of health care) and interested board members have formed a collaborative, and together they develop ideas for affecting a stronger patient voice on health care boards.

Peer-to-peer networking is facilitated with meetings in Toronto and conferences in other regions of the province. Participants also contribute to an online forum where they keep the conversation flowing between meetings. Additionally, PAC has compiled a web-based resource library featuring material on topics such as governance, the patient perspective, and quality of care – this library is available to the public here.

Interested board members or volunteers can get involved by contacting Jennifer Carroll.

Conference on 'Improving the Patient Experience'

The Patients' Association of Canada launch conference was held on February 15, 2011. Over 100 health care professionals, managers, and policy makers joined patients at this inaugural educational event that modeled new ways to conduct a public dialogue on 'Improving the Patient Experience.' Its results helped us refine our direction and elicited new ways forward.

The conference was designed and facilitated to allow everyone to organize themselves and bring their persepctives to the day. There was a powerful exchange of views; people made new connections, had surprising and enjoyable conversations, and explored new directions. Constructive and collaborative ideas emerged. Participants listened and spoke, contributed thoughtfully, and sought possibilities beyond the usual answers.

The results of the conference were analyzed and consolidated by a group of more than 30 volunteers at a follow-up session in March. We now have fresh ideas about how to bring the patient voice to the clinical level, the service delivery level and the policy level of the health care system.

The Patients’ Choice Awards

PAC recognizes that there are many health care organizations, professionals and support workers who are very responsive to the patient perspective on health care and who provide patient sensitive service. Because we believe that there should be more public acknowledgment of good practice, PAC has initiated the Patients’ Choice Awards in collaboation with the Ontario Medical Association (OMA).

The first recipients of the Patients' Choice Awards are Dr. David Newport and Dr. Carolyn Brown. Both are members of the Primary Health Services of Peterborough. This initiative is the first of its kind in Canada where patients can nominate the candidates and another group, also patients, judge the entries and decide the winners. We received many thoughtful stories explaining the type of care that patients value. The motto for the award, 'Caring, listening, hearing,' was derived from the letters of nomination.

Key Activities: We will continue the Patients’ Choice Awards with the OMA and hope to expand this type of initiative to other health disciplines and make them a part of our educational efforts.

Advisory Services to Organizations to Improve and Increase Patient Engagement

Many health care organizations have adopted patient-centred approaches to care, research and other health related activities. Although they are committed to recognizing the patient perspective, they often need some support; in many organizations the patient voice is not yet strong enough. PAC has begun to offer advisory services to such organizations. We expect that our growing capacity to articulate the patient perspective and our expert membership will provide useful support.

Key Activities: We are busy connecting with other like-minded organizations and we anticipate innovative projects in 2012.

Gather and Share Patient Narratives

The core of PAC’s mission is to listen to the health care experiences of patients and those who care for them. We share stories with all our members at regular meetings, and we hear more stories from almost everyone we speak to about PAC. Hearing these stories with our members at general meetings, and we continue to hear them from almost everyone we speak to about PAC. Such stories are the material basis of the patient perspective throughout health care.

Key Activities: The website is populated with thoughtful patient stories, and our growing web presence will help us gather even more: we have various interactive features to enable patients to tell their stories.

User Guide

We're starting a peer-to-peer User Guide that will be available on our website. The User Guide will be an an open-access collaboration where everybody will be able to contribute new material and edit existing information.

The User Guide will include information on health policies and procedures at institutions across Canada coupled with relevant experiences of people who come into contact with various parts of the health system. A panel of specialized volunteers will review contributions on an ongoing basis to monitor accuracy and maintain standards.

Key Activities: PAC administrators will seed the User Guide with information found in Navigating the Canadian Health Care System, by Francesca Grosso and Michael Decter and published by Penguin Inc. From there, the ongoing process of creation and collaboration will constantly change and enrich the User Guide landscape.

Research

Complaints Across Canada

Our first policy review was completed by graduate students in the School of Public Policy and Governance at the University of Toronto. It examined complaints mechanisms from across Canada and dramatically displayed the strengths and weaknesses of a system that varies from province to province. The results will help PAC formulate a patient perspective on complaints procedures for all of Canada.

Patient Engagement

A second study has been commissioned from the U of T on patient engagement across Canada. It will identify the extent to which patients are already engaged in service planning and governance of health care in Canada.

Key Activities: The results of both studies will be completed and distributed across the country by late 2011. We will initiate new research projects on a regular basis.

Publications

On our website, we post a regular blog of patient related information, including news items, events, and fresh links to other relevant sites. We also post patient stories and keep the world aware of our ongoing activities.

Our newsletter, The Patient Voice, is a communication vehicle keeping subscribers up to date about the current state of PAC. Our book publishing arm, Health and Everything Publications, recently published Sholom Glouberman's own account of his patient experience, My Operation: A Health Insider Becomes a Patient.

PAC uses social media tools like Facebook and Twitter to interact with health care organizations, policy agencies, patient advocacy bodies, and individual members.