Patient and Family Involvement

IT’S SAFE TO ASK

It’s Safe to Ask is a program launched by the Manitoba Institute for Patient Safety that encourages patients and families to request the information they need in order to become active participants in their care. It includes easy-to-read materials for patients, as well as information kits for healthcare providers and organizations.

It’s Safe to Ask encourages patients and health care providers to discuss 3 key questions:
* What is my health problem?
* What do I need to do?
* Why do I need to do this?

Visit www.safetoask.ca for more information.

The Patient Advisory Committee of MIPS developed the Patient Advocate Form for people who wish to appoint a person(s) to speak up and act on their behalf.  The public can contact MIPS at 1-866-927-6477 or 204-927-6471 to tell us if this form is useful.

PROMOTING HEALTH LITERACY

The Canadian Public Health Association’s Health Literacy Portal provides easy access to key information about health literacy in Canada for health professionals, researchers, and interested individuals. In the USA, the Ask Me 3 site provides extensive information about a program similar to “It’s Safe To Ask”. The Joint Commission in the United States also provides information on Improving Health Literacy to Protect Patient Safety in their booklet titled “What Did the Doctor Say?”.

Other relevant sites include Literacy Partners of Manitoba and Health Literacy Studies at the Harvard School of Public Health.

GUIDES FOR PATIENTS

Finding Your Voice: Our Journey with Cancer through the Health Care System is a Canadian book that encourages readers to become their own health care advocates. It addresses such questions as: What is an advocate? When may a person/patient need an advocate? How does a patient choose an advocate? and What role(s) can an advocate play? It is the author’s hope that readers will gain confidence and feel empowered to stand up for their rights and actively participate in decisions affecting their health. The book is intended to be user-friendly and is designed to fit in a pocket, purse or briefcase, so people can take it to medical appointments. The essence of this book’s message is: ask questions, take charge, find accurate and reliable information and resources, do what you can with resources available, stay positive, be prepared to speak up/advocate, and get involved in your health care decisions.

The South Eastman / Santé Sud-Est Regional Health Authority of Manitoba has developed a booklet, Hospital Information for Patients: partnering with you during your hospital stay to provide patients with important information about their hospital stay to ensure their experience is as positive and comfortable as possible. It includes information for family and friends who visit patients in the hospital. The booklet is also available in French.

A Citizen’s Guide to Health Indicators, published by the Health Council of Canada, is for individuals who are interested in health care and health information. Indicators are high-quality statistics that help understand and compare Canadians’ health and health care. This resources describes what health indicators are, where they come from, and how they can influence health care decisions and policies.

Health Canada’s Advisories, Warnings and Recalls provide timely information on issues that concern the health of Canadians. There are 4 types of risk communications products: Public Advisories; Public Warnings; Information Updates; and Foreign Product Alerts. Consumers, patients and caregivers, as well as health professionals can also subscribe to MedEffect Canada, a free service to stay informed of advisories, warnings and recalls for health products that Canadians use every day.

In November 2008, the Government of Saskatchewan conducted a Patient First Review to find out what Saskatchewan residents feel about the way health care services are delivered, and to explore ways to improve the patient experience in the province.  The reports call for changes to how patients experience the health system, how health services are delivered, and how the system is administered.

A number of organizations have published guides to help patients participate in making their healthcare experience safe. For instance, Nova Scotia Health offers a collection of Safety Tips for Patients.

General guides range from brief (such as the Agency for Healthcare Research and Quality’s 20 Tips to Help Prevent Medical Errors) to lengthy (such as the Ontario Hospital Association’s Your Health Care – Be Involved). PULSE: Persons United Limiting Substandards and Errors provides information on patient safety advocacy, education and support.

The Personal Healthcare Journal is an easy to use book, ideal for recording medications, allergies, tests, symptoms, questions for the doctor, answers received and more. It is designed to help patients, family members and caregivers learn how to talk to doctors and healthcare providers and get the most from their visit.

The Joint Commission’s Speak Up site features a variety of brochures and posters to encourage patients to become active participants in their care and help to prevent adverse events. The Partnership for Healthcare Excellence has developed a series of “What You Can Do” fact sheets to increase patient and family engagement in care. In the UK, the National Patient Safety Association hosts a “Please Ask” site, which includes its own set of materials to help patients “be informed.”

PATIENT ASSOCIATIONS

Patients for Patient Safety Canada is committed to bringing the perspectives of patients and families to healthcare organizations to engage in safety improvements.  The Patients’ Association of Canada is a national, patient-led and patient-governed organization that speaks to the experience that people have as patients.

Patients For Patient Safety, a division of the World Health Organization’s World Alliance for Patient Safety, seeks to support individuals and organizations that are involved in patient safety issues and to help forge links between them.

Consumers Advancing Patient Safety (US) works to raise awareness of patient safety issues and to advocate for change. The site explores ways for patients to become meaningfully involved in promoting safety, while recognizing that patient-involvement initiatives should not shift too much responsibility onto patients and away from healthcare providers.

Partnership for Patient Safety (US) offers consulting to organizations on building a culture of safety and adopting a patient-centred approach; the site also promotes books, videos, and other materials for caregivers and patients.

See also Research on Patient and Family Involvement.