Measuring What Matters to Patients with Patient Experience Surveys

AFHTO’s measurement initiative, Data to Decisions (D2D), aims to measure quality according to what matters most to patients, according to the Starfield Model of measurement. In 2015, AFHTO and Patients Canada to conducted an online survey, developed with the help of volunteer patients, to determine which indicators of health care quality are most important to patients. Over 200 patients participated. Patients told us that what matters most to them is:

• Involvement in decisions about their care.
• Reasonable wait times for appointments.
• Opportunity to ask questions.
• Providers who spend enough time with them.
• Access to their regular care provider
• Providers who listen to their feelings and concerns.

Teams who contribute data to D2D have the opportunity to share data about how they are doing in terms of these indicators. One of the easiest ways to obtain this data is through a patient experience survey.

• Sample Patient Experience Survey developed by AFHTO and HQO [PDF]
• HQO Patient Experience Survey Guide and Toolkit [PDF]
• Sample Plain-Language Patient Experience Survey from Trent Hills FHT [editable Word document]

Once you’ve completed your patient engagement survey, consider sharing the results with your patients. Check out this example from the Centre for Family Medicine FHT in Kitchener! Looking for something NEW to freshen up your patient experience surveys? Try the Patient Perceptions of Patient-Centredness Questionnaire (PPPC) [PDF]

• The PPPC is a 14-question survey that will let your patients tell you how patient-centered THEY think their care is. Some of the questions are similar to the ones you know from the HQO’s PES, or some of the questions in Data to Decisions – but they dig a little deeper into the relationship between patient and provider, and how that relationship affects the care they receive. It can give you a fresh perspective on the care your team is providing, amplify your patients’ voice, and maybe help relieve some of the “survey fatigue.”
• But what does it all mean? Once your patients have sent back their surveys, check out the Instructions for Scoring the PPPC [PDF] and enter the data in the PPPC Score Calculator [downloads an Excel workbook]. The calculator will automatically turn your patients’ answers into aggregate scores for the following:
  • Each of the 14 questions
  • Each of the 3 components of patient-centredness
    • How thoroughly their illness experience has been explored
    • Whether they found common ground with their physician
    • Whether they feel understood as a whole person
  • Overall patient-centrednesss.
• Wondering where the PPPC might fit in with your existing patient experience survey, how the questions relate to D2D indicators, or what to do with the results once you’ve seen them? Check our our FAQ for answers!
• Consider sharing your results! The more we hear back from teams like yours, the more we can help all teams deliver more patient-centered care. Send your completed calculator worksheet to us at improve@afhto.ca.

Beyond the Survey: Engaging Your Patients in Quality Improvement

HQO’s  Insights on Patient Engagement looks at the different ways health care organizations engage their patients. Across the health sector, surveys are the most common way to engage patients: 93% of home care organizations; 79% of interprofessional primary care teams, 74% of long-term care patients, and 66% of hospitals use patient surveys. In addition to surveys, here are some other ways organizations are engaging their patients, and how many interprofessional primary care teams are using them:

• Focus groups, town halls and community meetings: 23% of iteams
• Advisory council or similar: 9% of teams
• Patients on the board: 10% of teams
• Patient advisors on QI committees: 12% of teams
• Patients involved in co-design: 9% of teams

At 10%, interprofessional primary care teams have a small lead when it comes to including patients on their boards. At 23%, interprofessional primary care teams are in the middle of the pack (tied with long-term care) when it comes to engaging patients through focus groups, town halls, and community meetings.  Interprofessional primary care teams lag behind when it comes to including patients in other leadership and planning activities.

• 80% of  long-term care facilities, 72% of hospitals, and 71% of home care organizations have patient advisory councils.
• 59% of hospitals, 36% of home care organizations, and 23% of long-term care facilities engage patients in developing their QIP.
• 43% of home care organizations, 33% of hospitals, and 14% of long-term care facilities include patient advisors in QI committees.
• 38% of hospitals, 14% of home care organizations, and 14% of long-term care facilities include patients in co-design.

Patient Engagement Tools from Your Peers

Shared Resources from AFHTO member teams

These tools were developed by AFHTO member FHTs and NPLCs to facilitate their own patient engagement efforts; the teams have generously agreed to share them with their fellow AFHTO members. Help build our library by sharing your own patient engagement tools and resources.

• North Renfrew FHT Advisory Committee Terms of Reference [PDF]
• South East Toronto FHT Patient Advisory Council Terms of Reference [PDF]

AFHTO Conference Presentations on Patient Engagement

• Nothing About Me Without Me: Applying Citizen Engagement Methods in a Family Health Team. Presented by Tara Kiran and Sam Davie (St. Michael’s Hospital Academic FHT) at AHFTO 2016.
  • View slides from the presentation [PDF]
• Leading by Example: How One Physician’s Commitment to Improving Patient Care with Technology Caused a Ripple Effect of Change. Presented by Joan Chan and Kathleen Vanleeuwen (Guelph FHT) at AFHTO 2016.
  • View slides from the presentation [PDF]
• Patient Councils: Experiences within the GTA. Presented by Nancy Gale (Mississauga Halton CCAC) and Sonia Mastroianni (South East Toronto FHT) at AFHTO 2015.
  • View slides from the presentation [PDF]
• Engaging the patient in their care. Theme 2 from the AFHTO 2014 Conference, In Partnership with Patients: True Integration of Care. Presentations in this theme include:
  • Engaging the Patient through Portals: Tools and Tales
  • Using the NHS’s Experience Based Design (EBD) methodology to capture and understand your patient’s experiences and co-design solutions together.
  • Timmins Health Link: Practical Applications of Patient Engagement
  • Patient Engagement: Progressing from Pamphlets to Partnerships
  • Telehomecare: Engaging patients with chronic disease in their care using remote monitoring technology and clinical expertise in the home
• Looking to the Future: Collaboration & Engagement Through Social Media. Presented by Kevin McLeod (Barrie & Community FHT) at AFHTO 2010.
  • View slides from the presentation [PDF]

Patient Engagement Tools from Partner Organizations

Patients Canada

Patients Canada has pioneered the practice of bringing the authentic patient voice to health care decision-making, ensuring decisions reflect patient priorities.

• Patient and Caregiver Stories
• Projects and Partnerships that Support Patient Involvement
• Learning Centre: Resources for Patients and Family Caregivers

Health Quality Ontario

Health Quality Ontario (HQO) define patient engagement as “patients, families and health providers actively collaborating to improve Ontario’s health system.” They encourage and help providers to work with patients and families to understand and respond to their needs.

• Framework for Engaging Patients
• Patient Engagement Tools and Resources
• Insights on Patient Engagement from the 2017-18 QIPs

For more information about these tools and resources or other patient engagement best practices, please email Engagement@HQOntario.ca.

The Change Foundation

Patient and caregiver engagement is an ongoing focus for The Change Foundation, an independent health policy think-tank that works to inform positive change in Ontario’s health care system.

• The Panorama Panel