Originally published December 2017
Several years ago, a 15-year-old male patient with a cardiac rhythm disorder underwent an ablation procedure. During the procedure, the patient unexpectedly became acutely unstable. His physician intervened immediately to identify and correct the problem.
While the patient made a full recovery, the patient’s mother wanted to find out what had happened and why. She did research and asked questions. Changes did take place, including a decision by her son’s physician to change how he performs ablations.1
As in the case of the young man and his mother, patients’ stories and experiences can be a powerful force leading to safer care and better patient outcomes.2,3,4 Their voices and involvement can contribute to planning and delivery, motivating learners in patient safety education, and improving quality and safety.
Patient engagement at multiple levels
Healthcare systems recognize that patient involvement can play a key role in planning and delivery at many levels.1,5
At the system level, patient engagement is being sought for activities such as the development of policies and practices. For example, the Federal Advisory Panel on Healthcare Innovation recommended in 2015 that patient engagement and empowerment be one of the five key areas to inspire innovation in healthcare.1
Organizations are also soliciting patient engagement for a number of purposes. Patients, families, and the community, for instance, have been actively involved in the development and design of a new children’s hospital in Saskatchewan.6
Engaging patients in their direct care
At the direct patient care level, research has linked patients’ increased engagement in their own care with better health outcomes.3 There are many ways to involve patients in their own care, but deciding which are most appropriate will depend on the patients’ needs, interests, and values.
Healthcare providers should consider each individual case and determine whether it is appropriate to do one or more of the following:
- Ask patients relevant questions including about their health goals, and listen to their answers.
- Invite patients to ask questions.
- Communicate using plain language.
- Offer available information, education, and decision aids to help patients make informed decisions.
- Make it easy for patients to provide feedback. Offer them appropriate ways of communicating, such as online patient portals. These can give patients easier access to health information, facilitate interaction and communication with healthcare providers, and enhance adherence to healthcare advice and medication regimens. The benefits and risks of portals are examined in greater detail in the CMPA article, "Patient portals: A new communication tool for doctors and patients."7.
Motivating learners in patient safety education
Engaging patients in safety training for physicians gives learners the opportunity to view patient safety through a "patient lens," a significant move from traditional teaching in this area.8,9
Patient stories can be used to teach a variety of topics, including the imperative to improve clinical care, patient safety science principles (e.g. human factors, decision-making, cognitive biases, situational awareness), and communication, and to increase patient involvement in treatment decisions. These first-hand accounts bring a different perspective from that of the health professional and can be impactful. Patient involvement in curriculum development and medical conference planning can also be beneficial.10
Resources on engaging patients
Healthcare professionals looking for more guidance on engaging patients can turn to a number of resources. The Canadian Patient Safety Institute’s patient-led program, Patients for Patient Safety Canada, brings patients’ healthcare experiences to patient safety at all levels in the health system.11,12,13 The institute also has produced a guide to engaging patients in quality and safety, Engaging Patients in Patient Safety – Canadian Guide.14 In the United States, the Institute for Healthcare Improvement is another source for information and tools on patient engagement.15
Patient involvement in quality and safety improvement
Engaging patients can advance process and system improvements. Patients and families, for example, can be involved as advisors on system improvement efforts.
By involving patients, "healthcare professionals no longer need to make assumptions about what patients value or how patients and families can contribute to safer care—they have a representative on the team to ask."16 Patient involvement also helps align quality improvement goals and activities with what is important to patients and families.
The following table provides examples of how patients and family members can be involved in quality and safety initiatives.16
|Quality and safety initiatives||Patient and family advisor role|
|Patient safety incident analysis (also known as root cause analysis)
- Share personal story
- Identify pieces of process that are missing from patient’s perspective
|Process improvement teams
- Serve on teams to reduce patient harm, such as avoidable readmissions, falls, and infections
|Discharge planning process improvement
- Contribute to content and design of new patient education materials
- Proactively participate in bedside rounds (discussion)
- Assist in piloting new patient education materials
The CMPA’s booklet Disclosing harm from healthcare delivery: Open and honest communication with patients17 notes that the patient’s and family’s perspectives on what happened are important to the success of a quality improvement (QI) or incident review. Their views on system-level improvements could benefit other patients.
Patients and families could provide their comments to the QI committee conducting the review. They could write to the committee or meet with committee members. As QI reviews are confidential in nature, patients and families are generally unable to participate in any other aspect of the QI committee’s investigation. To ensure these reviews are successful and effective, physicians and other health professionals must have satisfactory assurances that the investigation of the information will not be used or disclosed outside of the QI process in subsequent legal proceedings. The statutes governing QI information apply only if the review is conducted by a properly constituted QI committee.
The patient voice—a vital resource
The CMPA encourages physicians, other healthcare providers, and health system leaders to actively engage patients in healthcare, when appropriate. Whether in various levels of care planning and delivery, medical education, or direct patient care, the patient perspective is a vital and invaluable resource.
- Canadian Patient Safety Institute [Internet]. Patient stories: ‘If something doesn’t feel right, you have to ask the question.’ Edmonton (AB): Canadian Patient Safety Institute; 2014 [cited 2017 Aug 10]. Available from: http://www.patientsafetyinstitute.ca/en/toolsResources/ Member-Videos-and-Stories/Pages/default.aspx
- Health Affairs [Internet}. James J. Health Policy Brief: Patient Engagement. Bethesda (MD): Project HOPE —The People-to-People health Foundation, Inc.; February 14, 2013 [cited 2017 Aug. 10]. Available from: http://healthaffairs.org/healthpolicybriefs/brief_pdfs/healthpolicybrief_86.pdf
- Hibbard JH, Greene J. What the evidence shows about patient activation: better health outcomes and care experiences; few data on costs. Health Aff [Internet]. 2013 Feb [cited 2017 Aug 10]; 32(2):207-214. Available from: http://content.healthaffairs.org/content/32/2/207.long doi: 10.1377/hlthaff.2012.1061
- Fooks C, Obarski G, Hale L, Hylmar S. The patient experience in Ontario 2020: What is possible? HealthcarePapers [Internet]. 2015 Jan [cited 2017 Aug 10]; 14(4):8-18. Available from: http://www.longwoods.com/content/24339 doi: 10. 12927/hcpap.2015.24339
- Health Innovation Forum [Internet]. Baker GR. Patient engagement to improve quality and system performance. In: Health Innovation Report, Raising the bar on health system performance. Montreal: Health Innovation Forum; 2015 [cited 2017 Aug. 10]. 52 p. Available from: https://www.healthinnovationforum.org/wp-content/uploads/2014/01/Patients-as-partners_2015.pdf
- Baker GR, Fancott C, Judd M, O’Connor P. Expanding patient engagement in quality improvement and health system redesign: Three Canadian case studies. Healthcare Management Forum [Internet]. 2016 [cited 2017 Aug 10]; 29(5):176-182. Available from: https://www.ncbi.nlm.nih.gov/pubmed/27576853 doi: 10.1177/0840470416645601
- Canadian Medical Protective Association [Internet]. Patient portals: A new communication tool for doctors and patients. Ottawa (ON): CMPA; 2017 Mar [cited 2017 Nov 16]. Available from: https://www.cmpa-acpm.ca/en/advice-publications/browse-articles/2017/patient-portals-anew-communication-tool-for-doctors-and-patients
- Peat M, Entwistle VA, Hall J, Birks YF, Golder S, on behalf of the PipsGroup. A scoping reviewand approach to appraisal of interventions intended to involve patients in patient safety. J Health Serv Res Policy [Internet]. 2010 Jan 1 [cited 2017 Aug 10]; 15(Suppl 1):17–25. Available from: http://journals.sagepub.com/doi/abs/10.1258/jhsrp.2009.009040?url_ver=Z39.88-2003&rfr_id=ori%3Arid%3Acrossref.org&rfr_dat=cr_pub%3Dpubmed&
- World Health Organization. Patient Safety Curriculum Guide: Multi-professional edition [Internet]. Geneva, Switzerland: WHO Press; 2011 [cited 2017 July 7]. 271 p. Available from: http://apps.who.int/iris/bitstream/10665/44641/1/9789241501958_eng.pdf
- Nixon D, Wallace G. Patient engagement in teaching patient safety and QI. Slides presented at ASPIRE, Advancing Safety for Patients in Residency Education workshop hosted by Canadian Patient Safety Institute, Royal College of Physicians and Surgeons of Canada, Choosing Wisely Canada. 2016 May 10 – 13; Ottawa, ON.
- Canadian Patient Safety Institute [Internet]. Tips for partnering with patients/families on committees. Edmonton (AB): Patient Safety Institute; 2014 Nov 20[cited 2017 Aug 10]. Available from: http://www.patientsafetyinstitute.ca/en/toolsResources/Pages/Tips-forpartnering-with-patients-families-on-committees.aspx
- Canadian Patient Safety Institute [Internet]. Tips on ways to share your story. Edmonton (AB): Patient Safety Institute; 2014 Nov 20 [cited 2017 Aug 10]. Available from: http://www.patientsafetyinstitute.ca/en/toolsResources/pages/tips-on-ways-to-share-your-story.aspx
- Canadian Patient Safety Institute [Internet]. Tips for patient engagement in patient safety and quality committees. Edmonton (AB): Patient Safety Institute; 2014 Nov 20 [cited 2017 Aug 10]. Available from: http://www.patientsafetyinstitute.ca/en/toolsResources/Pages/PFPSC-Patientengagement-in-safety-committees.aspx
- Canadian Patient Safety Institute, Atlantic Health Quality and Patient Safety Collaborative, Health Quality Ontario, Patients for Patient Safety Canada. Engaging Patients in Patient Safety: A Canadian Guide [Internet]. Edmonton, AB: CPSI;2017 May [cited 2017 July 7]. 67 p. Available from: http://www.patientsafetyinstitute.ca/en/toolsResources/Patient-Engagement-in-Patient-Safety-Guide/Documents/Engaging%20Patients%20in%20Patient%20Safety.pdf
- Tools to support patient engagement [Internet]. Cambridge (MA): Institute for Healthcare Improvement; 2015 Mar 5 [cited 2017 Sept 20]. Available from: http://www.ihi.org/communities/blogs/_layouts/15/ihi/community/blog/ItemViewaspx?List=0f316db6%2D7f8a%2D430f%2Da63a%2Ded7602d1366a&ID=46&Web=1e880535%2Dd855%2D4727%2Da8c1%2D27ee672f115d
- Health Research & Educational Trust. Partnering to improve quality and safety: A framework for working with patient and family advisors [Internet]. Chicago (IL): Health Research & Educational Trust; 2015 [cited 2017 July 7]. Available from: http://www.hpoe.org/Reports-HPOE/2015/2015_patient_fam_engagement_FINAL.pdf
- Canadian Medical Protective Association [Internet]. Disclosing harm from healthcare delivery: Open and honest communication with patients. Ottawa (ON): CMPA; 2015 [cited 2017 July 7]. Available from: https://www.cmpa-acpm.ca/en/advice-publications/browse-articles/2015/disclosing-harm-from-healthcare-delivery-open-and-honest-communication-with-patients