Date:

Friday, July 24, 2015                 

A recent evaluation showed that partnering with patients and families has a positive impact on the safety of patient care. In this interactive session, the lessons learned from the independent evaluation of Patients for Patient Safety Canada (PFPSC), a patient-led program of the Canadian Patient Safety Institute (CPSI) will start the conversation on ways to increase the impact of patient and family partnerships in making care safer. Please come prepared to share your experience and contribute to our common knowledge.

Following the session, a short report summarizing the key points will be made publicly available. For this discussion, we use the term “patient-led program” to mean any group, network or organization of patients/families ​who represent the patient voice to improve quality and patient safety at all system levels (e.g. patient advisory groups, not-for-profit organizations, social networks)

Highlights from the July 24, 2015 webinar

In this interactive session the lessons learned from the independent evaluation of Patients for Patient Safety Canada (PFPSC), a patient-led program of the Canadian Patient Safety Institute (CPSI), formed the foundation for a conversation on ways to increase the impact of the partnership with patients/families in making care safer. The 70+ participants contributed to our common knowledge.

Tips for providers:

• Involve patients meaningfully and effectively by making the organization's strategy for patient engagement publicly accessible to all.
• Clarify how patients are included in patient safety, quality improvement, risk management committees and articulate early in the project how patients will contribute to goals.
• Think of patient engagement as part of normal operations - not a one-time activity.
• Demonstrate commitment to have the patient perspective included by engaging patients from the beginning of the project
• Ground rules should be established for groups meeting over time to ensure that there is an appropriate process to involve patients – e.g. avoiding jargon, avoid defensive posture, etc.
• Recruiting the right patient in the right group is important. Involve patients from diverse background for a range of opinions.  Having more than one patient representative gives an opportunity for patients to support each other as well as avoids tokenism. The client representative or liaison can help with this.  
• Ensure the patient voice is authentic and not filtered out in reports (e.g. after consultations or focus groups) by including sections or quotes in the report written in the patient voice and by explaining in the methodology section how patients were included.
• Communicate in advance and compensate fairly the patient/family volunteers for their time and effort by covering all expenses and if possible offer an honorarium to cover the time away from work and/or family. Patients expressed that being paid may take away the essence of what they contribute (their passion, independent perspective, heart and soul) therefore consider carefully if payment may introduce bias
• Allocate resources and support (e.g. liaison, regular meetings, common work plan) to patient/family and providers as they learn the role in the partnership
• Encourage all to listen with an open mind and engage in respectful dialogue
• Evaluate processes, outcomes and impact of patient/family initiatives by articulating at the beginning of the initiative the expected outcomes and impact listing measures and data sources
• Support patients/families to tell their story and to actively participate in conferences and events (help them prepare abstract and cover costs) especially by presenting on best practices and how their contribution helped improve outcomes

Tips for patients/families:

• Ensure that the patient contribution advances project goals and results in positive change by understanding at the beginning of the collaboration the anticipated outcomes and impact and how it is expected that the patient perspective can advance them, and by preparing for each collaboration (if appropriate consult with other patients)
• Expect that all expenses related to the collaboration are covered, however, clarify this and the reimbursement process in advance(e.g. what receipts to keep, what form(s) to complete)
• Help develop an infrastructure, including a liaison, to connect the health system requestors and the patient group. Without regular connections and communication, volunteers can be left in a passive position where they merely wait for requests.
• When receiving care, patients should ask for and use available resource, for example, portals that give access to test results or chart.
• At the beginning of collaborations, it is normal for patients to be unsure of what to say and how; clarify early that patients contribute with their own perspective and experience which shouldn't be censored. Patients should not use names or anything that would identify the specific incident or use terms like negligence; just share the facts of the story in a positive and collaborative way to achieve set goals.
• Volunteer to contribute to conferences and events by offering opening comments and closing remarks as well as learning sessions sharing how patients contributed to patient safety and quality

Other perspectives

• Patient engagement is spreading from acute care to home care and continuing care organizations. Some offer a patient portal with access to patient chart. Others have client/family advisory groups or councils that meet regularly to provide input into care, development of programs in the facility, anything at all that impacts their care and experience in what really is, their home. It is important to note that this is not just a venue to air concerns but to include families and residents in the plans for the facility and their care.
• The request for engagement has evolved with time: patients/caregivers are now invited by organizations to contribute as partners instead of offering themselves.
• Having the patient voice heard at conferences and events, possibly an event where only the patient issues are discussed, is a good way to increase awareness of how patient engagement can help improve patient safety.
• Engaging patients in research and/or accreditation or other specialized roles follows the same engagement principles, however, a more careful selection and orientation is needed to ensure fit

Resources:

• Patients for Patient Safety Canada
• World Health Organization Patients for Patient Safety Programme
• Incident Analysis Collaborating Parties - Canadian Incident Analysis Framework.
• Canadian Institute for Health Information - Patient Experiences Survey—Inpatient Care
• O'Brien Institute for Public Health - Patient reported outcome measures, Patient reported experience measures
• The Health Foundation - Helping measure person-centered care. A review of evidence about commonly used approaches and tools used to help measure person-centered care
• CFHI Patient Engagement Resource Hub
• McMaster University: The Public and Patient Engagement Evaluation Tool
• Ross Baker, 2014: The impact of patient engagement on quality, safety and outcomes
• Agency for Healthcare Research and Quality: Guide for patient and family engagement
• Canadian Foundation for Healthcare Improvement: Ingredients for successful patient engagement
• Lucian Leape Institute: Safety is Personal. Partnering with Patients and Families for the Safest Care
• Alberta Health Services: A resource toolkit for engaging patients and families at the planning table
• Trew et All. Harm to healing. Partnering with patients who have been harmed.
• PFPSC, Dec. 2014 - Tips for partnering with patients families on committees
• Carman 2013 - A Multidimensional Framework for Patient and Family Engagement in Health and Health Care
• HPOE/HRET/AHA Guides, 2015 - Partnering to Improve Quality and Safety: A Framework for Working with Patient and Family Advisors
• Mississauga Community Care Access Centre – Patient stories
• Champlain Community Care Access Centre – Patient declaration of values
• North Simcoe Muskoka Community Care Access Centre – 2014-15 Annual report
• Registered Nurses Association of Ontario – Person and Family Centred Care Best Practices Guide

Moderator:

Judy Birdsell, Patients for Patient Safety Canada

Agenda:  

• History and overview of Patients for Patient Safety Canada(pre-reading materials)
• Methodology and findings of the independent evaluation (pre-reading materials)
• Participants are invited to share findings from evaluations of their own patient-led programs
• Lessons learned and actions following the independent evaluation
• Participants are invited to share actions they are taking to increase impact of their own programs
• Participants will be invited to envision ways to increase the impact of patient/family partnerships

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Speakers:

• Donna Davis, Past Co-Chair, Patients for Patient Safety Canada
• Nittita Prasopa Plaizier, Programme Manager and Technical Lead, Patients for Patient Safety, World Health Organization
• Tazim Virani, Consultant, Health & Social Science Research & Management (TVA Consultants)

Contact information for Patients for Patient Safety Canada: www.patientsforpatientsafety.ca; info@patientsforpatientsafety.ca; 1.866.421.6933. On social media follow Canadian Patient Safety Institute.