Canadian Patient Safety Institute (CPSI)

• Link to Website:  http://www.patientsafetyinstitute.ca/ 
• Short Description:  CPSI was created by Health Canada in 2003. This organization leads change across the Canadian healthcare system that enables safer healthcare. They work with patient partners/organizations, hospitals, government, healthcare leaders and frontline clinicians to achieve their mission.
• Key Resource for Professionals
  • Engaging Patients for Patient Safety:  A Canadian Guide — http://www.patientsafetyinstitute.ca/en/toolsResources/Patient-Engagement-in-Patient-Safety-Guide/Documents/Engaging%20Patients%20in%20Patient%20Safety.pdf 
• Key Resources for Patients
  • Quick link:  http://www.patientsafetyinstitute.ca/en/About/Programs/shift-to-safety/Pages/public.aspx 

Patients for Patient Safety Canada (PFPSC)

• Link to website:  http://www.patientsafetyinstitute.ca/en/About/Programs/ppsc/Pages/default.aspx 
• Short Description: PFPSC is a program of the Canadian Patient Safety Institute that is led by patients. This is a group of volunteers that draw from their experience to ensure the voice of patients is heard and influences the evolution of patient safety in healthcare. It is supported by the Canadian Patient Safety Institute and contributes to the global Patients for Patient Safety program of the World Health Organization. 

Choosing Wisely Canada

• Link to website:  https://choosingwiselycanada.org 
• Short Description:  “Choosing Wisely Canada is a national campaign to help clinicians and patients engage in conversations about unnecessary tests and treatments, and make smart and effective care choices.” (quote from https://choosingwiselycanada.org/about/)
• Key Resources for Patients:  https://choosingwiselycanada.org/patient-pamphlets 

Institute for Safe Medication Practices Canada

• Link to website:  https://www.ismp-canada.org   
• Short Description:  This resource is provided by the Institute for Safe Medication Practices Canada and is part of the Canadian Medication Incident Reporting and Prevention System (CMIRPS). The CMIRPS allows patients/consumers to voluntarily and confidentially report medication incidents. SafeMedicationUse.ca is also a valuable repository of patient education to empower patients in preventing medication errors and helping them make informed decisions related to their medications.
• Key Resource for Patients: https://www.safemedicationuse.ca 

SafeMedicationUse.ca

• Link to website:  https://www.safemedicationuse.ca/index.html  
• Short Description:
• This resource is provided by the Institute for Safe Medication Practices Canada and is part of the Canadian Medication Incident Reporting and Prevention System (CMIRPS). The CMIRPS allows patients/consumers to voluntarily and confidentially report medication incidents. SafeMedicationUse.ca is also a valuable repository of patient education to empower patients in preventing medication errors and helping them make informed decisions related to their medications.
• Key Resource for Patients:  https://www.safemedicationuse.ca/tools_resources/5questions.html 

Health Quality Ontario

• Link to website:  http://www.hqontario.ca    
• Short Description: Health Quality Ontario (HQO) is an agency of the Ministry of Health and Long-Term Care of Ontario. They are the advisor to the Ministry on matters related to improving the quality of healthcare in the province. They are composed of an exceptional group of leaders, scientists, clinicians, and patients that analyze the healthcare system and make recommendations to improve care and the patient experience through comprehensive reports and quality improvement initiatives. HQO have a clear and progressive focus on patient engagement and offers tools via their website to support work in this regard.
• Key Resource for Patients/Family/Public (HQO Advisors Program):  http://www.hqontario.ca/Engaging-Patients/Health-Quality-Ontarios-Patient-Family-and-Public-Advisors-Broader-Network   

Patient Engagement – Catalyzing Improvement and Innovation in Healthcare

• Link to website:  https://www.longwoods.com/publications/books/24716  
• Short Description: This book is a compilation of ten case studies from Canada, the United States and England. The common theme that ties these case studies together is the innovation and leadership being demonstrated in the movement toward improving patient engagement in healthcare. Each case highlights different ways in which these hospitals worked together with patients to improve the way care is delivered and ensure patients and their families are empowered to act as a partner in their care.  

Centers for Medicare & Medicaid Services — Partnership for Patients

• Link to website:  https://partnershipforpatients.cms.gov 
• Short Description:  A US-focused coalition of over 8000 partners, including government agencies, private and public-sector healthcare institutions, employers, states and patient/consumer organizations. This initiative has a the broad goal of improving “the quality, safety and affordability of health care for all Americans” (quote from website noted above).

Institute for Safe Medication Practices

• Link to website: https://www.ismp.org 
• Short Description:  This organization offers consultation, education, medication-error reporting and other resources to US healthcare organizations, professionals, industry and insurers in the field of medication safety. 

ConsumerMedSafety.org

• Link to website: http://www.consumermedsafety.org 
• Short Description:  This is a resource for consumers provided by the Institute for Safe Medication Practices (ISMP) in the US. It offers important medication alerts, consumer education and a medication-error reporting system for consumers that have experienced an issue with a medication.

Sarah Singh, MA, Katharina Kovacs Burns, PhD, Jennifer Rees, BSc, Deanna Picklyk, MSW, Jessica Spence, MSc, and Nancy Marlett, PhD. Patient and family engagement in Alberta Health Services: Improving care delivery and research outcomes. Healthcare Management Forum. February 28, 2018

• Link to Full Article:  https://doi.org/10.1177/0840470417747003  
• Article Type: Editorial
• Country of Origin: Canada
• Quick Summary:  This 2018 article highlights the 10+ years of work by Alberta Health Services (AHS)—Canada’s largest public health system—to have patient and family engagement integrated into their culture, clinical practice, research and administration. Guiding this work for AHS is their internal Patient First Strategy, a comprehensive strategy founded on the organization’s values and its goal to create the type of healthcare culture their community has asked for. The authors highlight the key role of AHS’s patient and family advisors (over 600 at the time of this article) and advisory groups to enabling this cultural shift and promoting collaboration with healthcare providers. An important output of this was a mindset shift to “doing with” rather than “doing for”. Advisory groups were noted to be essential in identifying opportunities to improve quality, safety and the patient experience at AHS. The organization has built and begun utilizing surveys to measure the impact of their patient and family engagement efforts. Work to integrate patient participation into health research is also a notable, progressive achievement at this organization.
• Link to AHS Patient First Strategy:  https://www.albertahealthservices.ca/info/Page11981.aspx 

• Notable Quote: “Albertans want what is described by the Institute of Healthcare Improvement as: Care that is truly patient-centred, considers patients’ cultural traditions, their personal preferences and values, their family situations, and their lifestyles. It makes patients and their loved ones an integral part of the care team who collaborate with health care professionals in making clinical decisions.”

Mariano E. Menendez MD, Bastiaan T. van Hoorn BS, Michael Mackert PhD, Erin E. Donovan PhD, Neal C. Chen MD, David Ring MD PhD. Patients With Limited Health Literacy Ask Fewer Questions During Office Visits With Hand Surgeons. Clinical Orthopaedics and Related Research. May 2017.

• Link to Full Article:  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5384911/
• Article Type: Original research
• Country of Origin: United States
• Quick Summary:  This 2017 study focused on determining the relationship between health literacy and the quality and type of questions patients asked of surgeons during their first visit. In the hand surgery clinic where the study was performed, patients that scored low on a health literacy evaluation asked fewer questions, particularly about their therapeutic regimen and medical condition. Another interesting assessment in this study related to the percentage of patients that were prompted by their surgeon to ask questions. Only 29% of surgeons asked their patients if they had questions during this first visit. When they did, most patients asked questions.

• Notable Quote: “Instead of assuming that patients understand what they are told, orthopaedic surgeons may take “universal precautions” by assuming that patients do not understand unless proved otherwise.”

Seth S. Leopold MD. Editor’s Spotlight/Take 5: Patients With Limited Health Literacy Ask Fewer Questions During Office Visits With Hand Surgeons. Clinical Orthopaedics and Related Research. February 2017.

• Link to Full Article:  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5384940/
• Article Type: Interview
• Country of Origin: United States
• Quick Summary:  This editor of this journal conducted a short, 5-question interview with a hand surgeon that had recently conducted a study on the challenges faced by patients with limited health literacy. Key learnings from this interview include the need to properly assess patient literacy during patient-provider interactions. Ensuring patient comprehension of health information and explanations about their care was deemed to be vital in enabling informed decision-making. It was suggested that this is especially important in the context of an unexpected or unnerving diagnosis where assimilation of new information can be particularly difficult. Cultural competence was highlighted as key for clinicians to effectively transfer knowledge and support patient preferences. Enabling resiliency and forming empathic relationships with patients were also of noted importance.

• Notable Quote: “If the physician fails to identify a patient’s incomprehension (or incomplete comprehension) in the office, key recommendations will be misunderstood, the patient will be unable to make an informed decision about the risks and tradeoffs involved, and (s)he may not partner fully with the physician, decreasing the likelihood that treatment goals will be achieved.”

Marie-Pascale Pomey, Paule Lebel. Patient Engagement: The Quebec Path. HealthcarePapers. October 2016.

• Link to Full Article:  http://www.longwoods.com/content/24998
• Article Type: Editorial
• Country of Origin: Canada
• Quick Summary:  This 2016 paper is a response to an article from 2015 entitled, The Patient Experience in Ontario 2020: What is Possible?, also summarized below. The authors focus on efforts made to improve patient engagement on multiple levels within the Quebec healthcare system. More specifically, they discuss the concept of a Patient and Professional Partnership—the notion that patients should be considered a member of their healthcare team, bringing equally-valuable insights and perspectives into their care as the professionals they work with. In this model, shared decision-making is emphasized. Those living with chronic diseases—90% of Canadians aged 65 and over—are noted to build a particularly rich source of knowledge and experience. As people live with a chronic illness over a prolonged period of time, their insights become uniquely valuable and should be distinguished from the insights provided by healthcare professionals. Blending both patient and professional knowledge, experience and goals creates the foundation for partnership.

• Notable Quote: “…from the perspective of partnership, decision-making and quality care actions are based on the scientific knowledge of professionals and on the experiential knowledge of patients living with the disease.”

Kevin G. Volpp, MD, PhD & Namita Seth Mohta, MD. University of Pennsylvania. Improved Engagement Leads to Better Outcomes, but Better Tools Are Needed. Insights Report. May 12, 2016.

• Link to Full Article:  https://catalyst.nejm.org/patient-engagement-report-improved-engagement-leads-better-outcomes-better-tools-needed/
• Article Type: Original research
• Country of Origin: United States
• Quick Summary:  A 2016 survey of 340 US healthcare executives, clinicians and clinician leaders on the topic of patient engagement. The survey results suggest that although patient engagement is deemed to be important, the current rate of patients being actively participating and taking control of their health and healthcare is low. Strategies to improve this are also addressed in the survey with shared decision-making supporting by over half of the survey respondents.

• Notable Quote: “…a strikingly low percentage of patients — per the assessment of the council — are highly engaged: 42% of respondents indicated that less than a quarter of their patients were highly engaged, and more than 70% report having less than half of their patients highly engaged.”

Zara Cooper MD, Puneet Sayal MD, Sarah K. Abbett MD MPH, Mark D. Neuman MD. Elizabeth M. Rickerson MD. Angela M. Bader MD MPH. A Conceptual Framework for Appropriateness in Surgical Care: Reviewing Past Approaches and Looking Ahead to Patient-centered Shared Decision Making. Anesthesiology. December 2015.

• Link to Full Article:  http://anesthesiology.pubs.asahq.org/article.aspx?articleid=2467641
• Article Type: Editorial
• Country of Origin: United States
• Quick Summary:  This 2015 article relates to the issue of inappropriate surgery and the potential of patient engagement to reduce its incidence. They offer a definition of appropriate surgery as offering more benefit than harm to the patient. This definition however is subjective and through shared decision-making, they suggest that better, high-quality decisions by the patient can be made together with their healthcare team. The authors outline several historical approaches to improve the value of surgical care did not include patient engagement. Related to shared decision-making is informed decision-making—ensuring not only that patients understand the essentials about the surgery itself (including risks and benefits), but also that decisions adequately reflect their own personal values, preferences and goals. A conceptual framework for this is provided as a visual graphic. The authors finish by emphasizing the need for validated tools to be developed to measure high-quality decision-making in surgical care. The quote below concludes the article nicely.

• Notable Quote: “It is our belief that encouraging patient engagement and ensuring high-quality shared surgical decision-making will result in fewer inappropriate procedures.”

• Quote for Professionals:  “As our population ages and healthcare costs continue to increase, anesthesiologists and surgeons should play key roles in promoting decision-making paradigms to ensure that procedural care is conducted in a manner that adds value from the patient perspective.”

John Andrawis MD MBA, Sina Akhavan BA, Vanessa Chan MPH, Mandeep Lehil MD, Dana Pong MPH, Kevin J. Bozic MD MBA. Higher Preoperative Patient Activation Associated With Better Patient-reported Outcomes After Total Joint Arthroplasty. Clinical Orthopaedics and Related Research. March 2015.

• Link to Full Article:  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4488208/
• Article Type: Original research
• Country of Origin: United States
• Quick Summary:  This 2015 study aimed to assess whether patients that were highly engaged (described also as ‘activated’ in the literature) before their joint replacement surgery (i.e. total joint arthroplasty) had better outcomes. This team used the Patient Activation Measure (PAM) 13-question survey to assess patient activation/engagement levels before surgery. They then correlated the level of patient activation with post-operative levels of pain, activity, physical and mental health, as well as patient satisfaction. The results showed that patients with higher activation levels prior to surgery had better pain relief and improved activity levels. These patients also had better mental health and patient satisfaction scores. The authors suggest further research is needed to evaluate if increasing patient activation levels preoperatively also lead to such outcome benefits.

• Notable Quote: “Higher preoperative patient activation was associated with better pain relief, decreased symptoms, improved mental health, and greater satisfaction after TJA (total joint arthroplasty).”

Jessica Greene, Judith H. Hibbard, Rebecca Sacks, Valerie Overton, Carmen D. Parrotta. When Patient Activation Levels Change, Health Outcomes And Costs Change, Too. Health Affairs. March 2015.

• Link to Full Article:  https://www.healthaffairs.org/doi/full/10.1377/hlthaff.2014.0452
• Article Type: Original research
• Country of Origin: United States
• Quick Summary:  This 2015 article describes results of an observational study of primary care patients in a large Minnesota health system. Two group of patients were given a validated survey called the Patient Activation Measure (PAM). Changes in their scores were evaluated between a baseline and follow-up 1-2 years later. The results suggest that highly “activated” patients—defined here as those that have the knowledge, skill, and confidence to manage their own health and healthcare—are associated with better outcomes in a number of areas, as well as incurring lower costs for their care. As an interesting example, they note that “less activated patients are almost twice as likely as more activated patients to be readmitted to the hospital within thirty days of a discharge”. Increases in activation levels (moving patients from lower to higher activation/engagement levels) are also associated with these outcome and cost improvements.

• Notable Quote: “It is important to integrate patient engagement strategies into all efforts to improve the effectiveness and efficiency of care.”

Cathy Fooks, Genevieve Obarski, Lori Hale, Stephanie Hylmar. The Patient Experience in Ontario 2020: What Is Possible? HealthcarePapers. January 2015.

• Link to Full Article:  http://www.longwoods.com/content/24339
• Article Type: Editorial
• Country of Origin: Canada
• Quick Summary:  This 2015 article features authors from The Change Foundation in Toronto, Ontario. In this paper, they share the learnings from the movement to increase engagement of patients in healthcare across Canada. They discuss what they’ve heard directly from patients, seniors and caregivers in terms of their wants and expectations from their healthcare system. “The seniors and caregivers we spoke with did not want the moon”, they said, “They wanted straightforward and timely communication, shared decision-making with a collaborative healthcare team, the knowledge that the system would support them at home or in a long-term care or retirement home and respect for their time and convenience.” Also provided was an overview of how patient and family advisory councils are utilized and a summary of the various efforts across Ontario to improve patient engagement. The overarching theme of this article is that while some progress is being made, much work is to be done. They share a vision of what a more patient-centred healthcare experience would look like and some of the artificial barriers that slow progress.
• Link to follow-up commentary on this article: http://www.longwoods.com/content/24347

• Notable Quote: “…true patient-centred care requires thoughtful patient engagement and will contribute to a better patient experience as well as improving quality, safety and cost.”

Alexandra B. Kimball, MD, MPH. Kristen C. Corey, MD. Joseph C. Kvedar, MD. Harvard Medical School. Engaging patients to decrease costs and improve outcomes. Medical Economics. January 22, 2015. This essay was an honourable mention in the 2014 Medical Economics doctors writing contest.

• Link to Full Article:  http://www.medicaleconomics.com/medical-economics/news/engaging-patients-decrease-costs-and-improve-outcomes
• Article Type: Editorial
• Country of Origin: United States
• Quick Summary:  A 2015 essay written by three US-based physicians on the opportunities for patient engagement to enhance quality of healthcare delivery and reduce costs. Acknowledgement of the heavy-burden placed on today’s physicians and other healthcare workers set the context for this essay. The authors suggest that by empowering patients to take a more active role in managing their health and healthcare, more can be done with less. Shared decision-making and accessible use of technology were offered as enablers to improving patient engagement in healthcare.

• Notable Quote: “Although an overarching goal of patient engagement is to decrease cost, we do not have to sacrifice quality care.”

Cathal Doyle, Laura Lennox, Derek Bell. A Systematic Review of Evidence on the Links between Patient Experience and Clinical Safety and Effectiveness. British Medical Journal. January 2013.

• Link to Full Article:  http://bmjopen.bmj.com/content/3/1/e001570
• Article Type: Systematic review
• Country of Origin: United Kingdom
• Quick Summary:  This 2013 article provides a systematic review of most existing literature related to the patient experience. The investigators were specifically looking for associations between the patient experience and two other key quality measures, these being clinical effectiveness and patient safety. Examples of these measures include mortality, physical symptoms, length of stay and adherence to treatment. Fifty-five studies were reviewed and summarized. The authors lead this paper with a discussion of the numerous benefits of a positive patient experience and the factors that contribute to it. “Clear information, empathic, two-way communication and respect for patients’ beliefs and concerns could lead to patients being more informed and involved in decision-making”, they say. The results of their analysis revealed “consistent positive associations between patient experience, patient safety and clinical effectiveness for a wide range of disease areas, settings, outcome measures and study designs”. Overall, this paper offers a strong early signal that the patient experience—associated today with patient engagement and activation—is an important factor in the delivery of quality healthcare.

• Notable Quote: “Patient experience is positively associated with clinical effectiveness and patient safety, and supports the case of the inclusion of patient experience as one of the central pillars of quality in healthcare.”

• Quote for Professionals:  “Clinicians should resist sidelining patient experience as too subjective or mood-oriented, divorced from the ‘real’ clinical work of measuring safety and effectiveness.”

Susan Dentzer. Rx For The ‘Blockbuster Drug’ Of Patient Engagement. Health Affairs. February 2013.

• Link to Full Article:  https://www.healthaffairs.org/doi/full/10.1377/hlthaff.2013.0037
• Article Type: Editorial
• Country of Origin: United States
• Quick Summary:  The Editor-in-Chief of the Health Affairs journal introduces a February 2013 issue focused specifically on the topic of patient engagement.  The author highlights the emerging evidence correlating improved outcomes and reduced healthcare costs to increased levels of patient engagement. Importantly, the barriers to implementing patient engagement programs are noted, these sometimes being clinician attitudes and patient perceptions.
• Comment:  Many healthcare providers and patients have a tendency to hold onto the way things have been done in the past, the “normal” way of doing things. Change typically begins with those having an innovative mindset—those not content to accept the usual way of doing things. The early adopters of healthcare models that incorporate shared decision-making, patient self-management, active involvement of family/caregivers and awareness of patient risk/safety lead the way in the evolving healthcare policy and practice.
• Link to Health Affairs February 2013—New Era of Patient Engagement:  https://www.healthaffairs.org/toc/hlthaff/32/2

• Notable Quote: “…fully informed patients often choose less invasive and lower-cost treatment than their doctors recommend…”

Judith H. Hibbard, Jessica Greene. What The Evidence Shows About Patient Activation: Better Health Outcomes And Care Experiences; Fewer Data On Costs. Medical Affairs. February 2013.

• Link to Full Article:  https://www.healthaffairs.org/doi/full/10.1377/hlthaff.2012.1061
• Article Type: Narrative review
• Country of Origin: United States
• Quick Summary:  The authors of this 2013 article are keen to emphasize the difference between patient engagement and a term coined by one of the authors—patient activation. They have offered that the latter emphasizes the active, independent management of one’s own health and healthcare. Patient engagement is then offered as a broader term that encompasses patient activation, as well as the interventions and behaviours that support it. The Patient Activation Measure (PAM) is a survey used to determine the level of patient activation. Measured increases in activation are noted to be associated with better patient outcomes, better patient experiences and lower costs across a variety of health conditions in several different countries. Importantly, there is evidence indicating that tailored patient engagement programs can be successful in increasing patient activation, potentially leading to an increase in these aforementioned outcomes.

• Notable Quote: “It is important to integrate patient engagement strategies into all efforts to improve the effectiveness and efficiency of care.”

Richard L. Skolasky, Ellen J. Mackenzie, Stephen T. Wegener, Lee H. Riley. Patient Activation and Functional Recovery in Persons Undergoing Spine Surgery. The Journal of Bone & Joint Surgery. September 2011.

• Link to Full Article:  https://journals.lww.com/jbjsjournal/Abstract/2011/09210/Patient_Activation_and_Functional_Recovery_in.1.aspx
• Country of Origin: United States
• Type of Article: Original research
• Quick Summary:  This 2011 study assesses the correlation between patient activation—defined here as “an individual’s propensity to engage in adaptive health behaviors leading to improved health outcomes”—and recovery from spine surgery. The investigators were able to show that patients with a high activation score had less pain, less disability and better physical health compared to those with low scores.

• Notable Quote: “High patient activation was associated with better recovery after surgery.”