Engaging with Patients and Caregivers about Quality Improvement

A Guide for Health Care Providers

Let's make our health system healthier

Ontario
Health Quality Ontario

Ker

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About Us

Health Quality Ontario is the provincial advisor on the quality of health care. We are motivated by a single-minded purpose: Better health for all Ontarians.

Who We Are.

We are a scientifically rigorous group with diverse areas of expertise. We strive for complete objectivity, and look at things from a vantage point that allows us to see the forest and the trees. We work in partnership with health care providers and organizations across the system, and engage with patients themselves, to help initiate substantial and sustainable change to the province's complex health system.

What We Do.

We define the meaning of quality as it pertains to health care, and provide strategic advice so all the parts of the system can improve. We also analyze virtually all aspects of Ontario's health care. This includes looking at the overall health of Ontarians, how well different areas of the system are working together, and most importantly, patient experience. We then produce comprehensive, objective reports based on data, facts and the voice of patients, caregivers and those who work each day in the health system. As well, we make recommendations on how to improve care using the best evidence. Finally, we support large scale quality improvements by working with our partners to facilitate ways for health care providers to learn from each other and share innovative approaches.

Why It Matters.

We recognize that, as a system, we have much to be proud of, but also that we often fall short of being the best we can be. Truth be told, there are instances where it's hard to evaluate the quality of the care and times when we don't know what the best care looks like. Last but not least, certain vulnerable segments of the population are not receiving acceptable levels of attention. Our intent is to continuously improve the quality of health care in this province regardless of who you are or where you live. We are driven by the desire to make the system better, and by the inarguable fact that better... has no limit.

Health Quality Ontario Engaging with Patients and Caregivers about Quality Improvement: A Guide for Health Care Providers

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Introduction

Patient engagement is an essential way of incorporating the voices of patients and caregivers (including family members) into decisions that will affect the care that patients receive. In particular, engaging patients and caregivers in the quality improvement process makes them active participants in improving the health care system and supports the transition to truly patient-centred care. Health care organizations across Ontario are increasingly seeking input from patients and caregivers to drive the improvement of the care that they provide, inform their annual Quality Improvement Plans, and meet accreditation requirements.

Engaging with Patients and Caregivers about Quality Improvement: A Guide for Health Care Providers Health Quality Ontario

The benefits of patient engagement

Involving patients and caregivers directly in quality improvement processes can:

• Provide an important source of insight and ideas for quality improvement efforts^1-3
• Improve communication between patients and health care providers, leading to improved patient and provider satisfaction²
• Help health care providers embrace potential changes, as they are able to see them from the patients' perspectives¹
• Ensure that patients are full participants in decisions that affect them
• Empower patients to become involved in their own health care, rather than being passive participants^4.5
• Result in meaningful changes to health care services

Involving patients and caregivers in quality improvement can benefit organizations of any size, from solo primary care practitioners to hospitals.

Patient engagement in quality improvement in Ontario

The increasing importance of patient engagement is now reflected in the legislation in Ontario, with the coming into effect of Regulation 187/15 under the Excellent Care for All Act, 2010 on September 1, 2015. This regulation requires hospitals to engage patients in the development of their Quality Improvement Plans (QIPs), and further requires that their QIPs must contain a description of their patient engagement activities and how these activities inform the development of the QIP. Although these requirements apply only to hospitals at this point, patient engagement in quality improvement is a best practice that should be adopted by all health care organizations as they work to improve the quality of care that they provide.

Health Quality Ontario Engaging with Patients and Caregivers about Quality Improvement: A Guide for Health Care Providers 5

Health Quality Ontario's Patient Engagement Framework

To help patients, health care professionals, organizations, planners, and policy-makers, Health Quality Ontario has created a Patient Engagement Framework to guide the approach for patient engagement to achieve better quality care. This framework is a result of in-depth research and consultation with patients and professionals, and draws from a number of existing frameworks, including Ontario's Public Engagement Framework. Specifically, this framework has been created to unite the definition of patient engagement with guiding principles and enablers, and to define the three domains for engagement:

1. Personal care and health decisions, when patients and clinicians engage with each other to make shared decisions for the patient's care and health);
2. Program and service design, when organizations engage with patients to improve a specific program or service; and
3. For organizations, planners and policy-makers to engage with patients on policy, strategy and governance decisions.

Bottom line, the purpose of the framework is to help advance patient engagement in Ontario, as both a culture across all three domains and as a set of practices, and to help us achieve the vision of a highly engaged, patient-centred health care system, making decisions with patients.

Figure 1. Engaging Patients for Better Quality Care: Health Quality Ontario's Patient Engagement Framework

THE STRATEGIC GOAL
A strong culture of patient, caregiver and public engagement to support high quality health care

THE GUIDING PRINCIPLES
Partnership, Learning, Responsiveness, Transparency, Empowerment, Respect

ACROSS THESE DOMAINS
Personal care and health decisions
Program and service design
Policy, strategy and governance

ACROSS A SPECTRUM OF ENGAGEMENT METHODS
Share - Provide easy-to-understand health information
Consult - Get feedback on a health issue (e.g. policy or decision)
Deliberate - Discuss an issue and explore solutions
Collaborate - Partner to address an issue and apply solutions

ENABLED BY:
A culture of continuous quality improvement
Access to easy-to-understand health information
Commitment to health equity and cultural competence
Rigorous research and evaluation

6 Engaging with Patients and Caregivers about Quality Improvement: A Guide for Health Care Providers Health Quality Ontario

How this guide can help

This guide has been designed to guide health care providers on how to engage patients in designing, carrying out, and communicating about their quality improvement initiatives, including how to engage patients in the preparation of their QIPs. Patient advisors may also find the entire guide helpful as an orientation when they join your organization's quality improvement efforts. With this focus in mind, links are provided so that readers can access more detailed information on tools or techniques that they are interested in.

There are four chapters in this guide:

• Chapter 1 instructs readers on how to get started with engaging patient advisors in quality improvement
• Chapter 2 relates to what to do once the patient advisors are engaged as you design and test new changes for improvement
• Chapter 3 relates to how to spread the successful changes
• Chapter 4 describes how to engage patient advisors specifically in developing QIPs

This guide also contains two appendices that are written for patient advisors:

• Appendix 1 provides an introduction to quality improvement for patient advisors who are considering becoming engaged in quality improvement
• Appendix 2 provides an introduction for patient advisors as they become engaged in QIP development

This guide is not intended to be a comprehensive resource on how to conduct quality improvement initiatives - there are other resources that cover this. One excellent resource is Health Quality Ontario's Quality Improvement Framework (Figure 2). This framework is referenced throughout the guide in boxes at the top of each chapter that summarize the steps in each phase of the framework. The text that follows focuses on how to engage patients in these steps. Refer to the Quality Improvement Framework on Health Quality Ontario's Quality Compass website for more details on any step of the quality improvement process.

Figure 2. Health Quality Ontario's Quality Improvement Framework

GETTING STARTED
DEFINING THE PROBLEM
UNDERSTANDING YOUR SYSTEM
DESIGNING AND TESTING SOLUTIONS
IMPLEMENTING AND SUSTAINING CHANGES
SPREADING CHANGE

Health Quality Ontario Engaging with Patients and Caregivers about Quality Improvement: A Guide for Health Care Providers 7

Chapter 1

Getting Started: Planning and preparing to engage patients in your quality improvement initiative

8 Engaging with Patients and Caregivers about Quality Improvement: A Guide for Health Care Providers Health Quality Ontario

Assembling a team/Quality Committee within your organization

Recruit team members within your organization

It helps to have a range of viewpoints as you think through the design and execution of your organization's engagement initiative. Include some of the following staff members on your organization's team:

• Staff with experience or expertise in quality improvement
• Staff with experience in partnering with patients
• Health care providers who will be impacted by the changes being implemented

Set roles for members from your organization

Setting roles for participants within your organization will help the process go much more smoothly for all involved. When working with patients, the following roles are of upmost importance:

• A logistical coordinator and administrative support person
• A single primary support person to act as patient liaison/relationship builder/recruiter; this person can assist patient advisors with questions and check in with them between meetings

Preparing your team and your organization to engage patients in quality improvement

The idea of engaging patients in your quality improvement initiatives must be supported by your team members as well as the leadership and other stakeholders in your organization. The support of the leadership at your organization is essential to enable meaningful contributions from your patients. In addition to supporting the financial, logistical, and time commitments to complete the engagement as planned, the leadership should be committed to implementing suggestions or plans arising from the engagement. The leadership at your organization are in a unique position to help foster a culture of continuous quality improvement that incorporates patient engagement at its core.

Contact leadership in your organization to get their support regarding your general plan early, and keep them updated as you develop and refine the plan for your initiative. Here's what you should discuss with the leadership at your organization:

• The overall plan and goals for the quality improvement initiative
• How you expect patient advisors to contribute to change
• The anticipated extent of participation by the patient advisors
• The resources (financial, logistical, time) that will be needed to complete the engagement as planned
• Any risks and benefits of the engagement, and plans on how to deal with them
• Expectation of leadership in supporting the initiative

Address potential barriers to patient engagement within your organization

Within organizations that are new to engaging with patients as advisors in their quality improvement work, there may be a number of questions and anxieties related to the process of engaging with patients. Table 2 presents common sources of concern or reluctance to engage that you may encounter within your organization, as well as how to address them.

 

Table 2. Barriers to engagement within your organization and how to address them

• Inexperience/nervousness: Not all members of your organization involved in the initiative may have prior experience working or partnering with patients in this way.

  • Address: Set defined roles for participants from your organization, and make sure that everyone feels comfortable with their roles (see page 10 for discussion of roles).

• Skepticism about the utility of engagement: Some may be skeptical that engaging with patients will yield information or insights that will result in actionable change.

  • Address: Identify an explicit improvement goal that is meaningful to your organization as well as to patient advisors. All participants will be motivated and energized by a goal that will result in identifiable improvements.

  • Address: Try to begin with quality improvement initiatives that are relatable to patients (e.g., having them participate in the redesign of the waiting area, help to optimize way finding, or join a patient safety committee focused on hand hygiene or medication reconciliation) as opposed to more technical projects (e.g., optimizing the method for sterilizing surgical instruments).

  • Address: Remind the team that the success of the engagement activities will be evaluated throughout the process (e.g., through surveys and focus groups). You will keep using the engagement practices and models that work, and make adaptations to those that don’t.

  • Address: Share examples of how patient engagement has benefited other units within your organization and peer organizations. Consider reaching out to staff who were involved in these projects to share their experiences.

• Reluctance to expose deficiencies in your organization by engaging patients in the quality improvement process.

  • Address: Help your staff to see that patients actually experience these deficiencies and that you will be problem solving with them to address the issues. When you engage with patients, be honest and transparent, and help patients to understand the systems and restraints at play that they may not be familiar with.

• Worry that conflicts will arise

  • Address: Set up guiding principles for your team to help to reduce conflicts. Think about the potential points of conflict that may arise related to your specific project, and consider how you will address these. It’s important to establish expectations in advance, set ground rules for participation and encourage healthy debate.

• Fear of time commitment and competing priorities

  • Address: Plan the scope of the project so that it is manageable. Remember that you can scale up the project in the future. Engaging patient advisors in quality improvement initiatives doesn’t always mean staff working more, but working differently.

• Fear that you will not have the resources to implement suggested changes arising from the engagement

  • Address: Discuss the resources available to you with your organization’s leadership as well as front-line care providers who will be affected both before and during engagement. Be open with your patients about the resource limitations related to your project, and work within these limits.

  • Address: Remember that engagement does not have to be costly, but you should factor in expenses – often the cost of not engaging is much higher than covering patient advisors’ parking fees or transportation costs.

 

 

Remember that although the concerns listed in Table 2 are commonly expressed, evidence shows that few of these concerns are actually encountered in practice, and health care providers involved in patient engagement generally report positive results for their organizations.^5,8 If some staff members are very nervous or apprehensive, it may help them to have the opportunity to be an observer on another team that is working with patients, or to get started with a small project. Typically, once staff experience patient engagement in action they are more optimistic about partnerships in the future. These staff can often become your best champions.

Planning your quality improvement initiative and approach to patient engagement

Identify potential areas for improvement

One of the first steps in the quality improvement process is to identify areas for improvement in the care you currently provide. The decision of what to work on in your quality improvement initiatives can be influenced by a variety of inputs. Patients are one of the most important stakeholders in this decision, because they can best identify what they think is important to improve based on their experiences receiving care at your organization. Thus, a key role for patient advisors in the quality improvement process is to identify priority areas for improvement. Once priority areas for improvement have been identified, patient advisors can be engaged to participate in designing, carrying out and communicating about the improvement initiatives.

Here are some examples of how priority areas for improvement may be identified:

• Results of patient experience surveys or other surveys
• Trends in complaints or concerns voiced by patients and caregivers
• Prioritization of areas for improvement by the organization’s Patient and Family Advisory Council or Residents’ Council
• Input from patient advisors involved in Quality Committees/Teams
• The organization’s strategic plan
• The quality issues and indicators that will be the focus of the organization’s annual QIP
• The results of annual Resident Quality Inspections in long-term care homes
• Accreditation processes that identify areas where an organization has not met standards
• Investigation of critical incidents reported by health care providers or patients
• Networks involving peer health care organizations or entire health care sectors (such as Health Links)
• Comparative reports that show an organization’s performance relative to other organizations in Ontario and across the country. These may include Health Quality Ontario’s Measuring Up, Data to Decisions reports for family health teams, or other reports used by your organization
• Areas for improvement related to accountability agreement targets and indicators with the Local Health Integration Networks

The focus of your efforts as well as how you chose this focus will inform which populations you wish to engage.

Health Quality Ontario | Engaging with Patients and Caregivers about Quality Improvement: A Guide for Health Care Providers 13

Engaging Patients to Identify Potential Areas for Improvement

The patients you engage with to identify potential areas for quality improvement will not necessarily be the same patients you will engage with to design and carry out the initiatives. To identify priority areas for quality improvement, you should engage a larger number of patient advisors. This may be done as a survey, a focus group or town hall meeting, or in consultation with your organization’s Patient and Family Advisory Council. Also review the complaints and concerns voiced by patients and families. As you engage with patients to identify priority areas for quality improvement, offer them the chance to participate in the quality improvement initiatives that you will design to address the issues they identify as priorities. This is a great way to recruit interested patient advisors.

This guide largely focuses on engaging with patient advisors in designing and carrying out quality improvement initiatives, but it is essential that the patient voice is also incorporated in the identification of target areas for improvement.

Begin to set goals for the project and identify how your patient advisors will contribute

One of the most important steps in preparing for engagement is to set well-defined, achievable goals for the project. This will increase buy-in from participants and stakeholders from your organization as well as potential patient advisors. Start with general goals and refine them in collaboration with your patient advisors once they join your team. It’s important to define how your patient advisors will contribute to meeting these goals.

If you are just starting out with a new team of patient advisors, choose a project that is focused on improving patients’ experience; this will ensure that the project will resonate with patients and that their contribution will be unique and valued. Examples of good projects include those that involve improving transitions of care (e.g., working with patients to understand gaps) or improving communications with patients (e.g., developing materials to be given to patients with a chronic disease; creating case studies to help care providers practice their communication skills). On the other hand, highly technical projects (e.g., refining specifications for equipment standards) may not resonate with patients, and their potential contributions to such projects may be unclear.¹ Avoid engaging patients about a problem when decisions have already been made or when there is no room for flexibility in decision-making – this can be viewed as tokenism. Over time, you and your patient advisors will become more comfortable with creating meaningful partnership opportunities in all your activities.

Choose a method of engagement

There are many different methods for engaging patients, and each one has its strengths and limitations. Before choosing a method, it can be helpful to ask a few key questions in order to narrow down which methods might be most appropriate for your organization and the issues you wish to tackle. These questions include:

• What phase are you at in planning the quality improvement initiative? Consider how to engage patients to help choose a focus for your quality improvement efforts (Getting Started) versus asking them to help develop and implement a specific quality improvement initiative (Designing and Testing Solutions; Implementing and Sustaining Changes).
• What is the focus you have chosen? For example, if your focus is on improving communication with patients, what methods will allow you to investigate patient experiences and explore communication alternatives with patients?
• Who are the patients you most need to hear from? For example, if you are focused on reducing barriers to providing input, you will want a method that allows you to engage with people who may have perceived or experienced those barriers.
• How extensive do you expect the engagement to be? Your methods should provide a reasonable opportunity for patients to share their experiences, expectations, and perspectives, and comment on the issues on which you are seeking feedback.
• What can be accomplished with the time, money, in-kind resources, and organizational commitment you have available? Be realistic about your engagement strategy and be clear about what patient advisors can expect.

14 Engaging with Patients and Caregivers about Quality Improvement: A Guide for Health Care Providers | Health Quality Ontario

Suggested Methods for Patient Engagement

1. One-on-one Debriefs/Interviews

• When to use:

  • To identify priority areas for quality improvement.

  • To explore a single issue or range of issues with a single patient or caregiver.

• Examples:

  • Ask patients after appointments/during care what could be improved.

  • Set up interviews with patients who have encountered problems or have expressed new ideas to hear their stories and opinions on how to avoid such problems in the future.

• Resources:

  • Refer to Health Quality Ontario’s checklists: Supporting Patients and Caregivers to Share Their Stories and Communicating Clearly with Patient and Caregiver Advisors.

  • Consider using Emotional Touchpoints methodology (developed by the National Health System in the UK) to guide interviews.

• Notes:

  • Interviews can lead to opportunities to co-design quality improvement initiatives in the future.

  • Consider whether another staff member may be best to conduct these debriefs to ensure open and honest feedback is obtained.

  • Develop a systematic way of collecting/sharing results before starting. Involve patients in developing interview questions and analyze results within privacy limits.

2. Surveys and Feedback Forms

• When to use:

  • To receive systematic feedback from a larger population.

• Examples:

  • Conduct an open-ended survey asking patients which aspects of their care they would most like improved.

  • Conduct a survey (organizational or "intercept/real-time") to determine popular food options in hospitals or long-term care homes.

• Resources:

  • Refer to the Primary Care Patient Experience Survey developed by Health Quality Ontario and collaborators.

  • Refer to the Ontario Hospital Association’s Recommended Patient Survey Instruments.

• Notes:

  • For best results, include patient advisors in the development of questions, distribution, and analysis.

  • Asking standard questions during a clinical encounter (e.g., Ask Me Three) can provide useful real-time information.

3. Discussions with Patient and Family Advisory Councils (PFACs)

• When to use:

  • To identify priority areas for quality improvement.

  • To discuss approaches to other patient engagement methods.

• Examples:

  • Involve the PFAC in developing your Quality Improvement Plan (QIP).

  • Involve the PFAC in building the organization’s strategic plan.

  • Ask the PFAC to partner on a key organizational quality improvement priority.

  • Ask the PFAC for input on how to conduct other patient engagement efforts.

• Resources:

  • Refer to the Agency for Healthcare Research and Quality’s Working With Patient and Families as Advisors: Implementation Handbook.

  • Refer to Health Quality Ontario’s three mini-guides: Recruiting for Diversity, Creating an Effective Terms of Reference, and Choosing Meaningful Projects.

4. Focus Groups / Other Public Meetings (One time)

• When to use:

  • To identify priority areas for quality improvement.

  • To identify general approaches to a particular problem.

  • To extend invitations to participate in quality improvement projects resulting from the meeting.

• Examples:

  • Conduct a focus group with bereaved people to identify areas for improvement in palliative care.

• Resources:

  • Refer to the University of Wisconsin’s Focus Groups: A Guide to Learning the Needs of Those We Serve.

5. Meetings with Patient and Caregiver Groups

• When to use:

  • To identify priority areas for quality improvement for specific populations.

  • To recruit patient advisors to a quality improvement team.

• Examples:

  • Hold a meeting with a chronic kidney disease support group to determine how to improve patient experience at a dialysis clinic.

• Resources:

  • Contact Ontario 211 or refer to thehealthline.ca to identify groups in your community.

6. Teams/Task Forces for Specific Quality Improvement Projects

• When to use:

  • To develop and implement a specific quality improvement project in partnership with patient advisors.

• Examples:

  • Form a team to revise the format of treatment information provided to patients on discharge.

  • Form a team to improve an important quality issue (e.g., increase cancer screening uptake by targeting communications to specific populations).

• Resources:

  • Refer to the Institute for Patient and Family-Centred Care’s Tips for Group Leaders and Facilitators on Involving Patients and Families on Committees and Task Forces.

7. Quality Committees or Other Groups that Discuss Quality Issues

• When to use:

  • To collaborate on driving the entire quality improvement process, from identifying priority areas to developing/implementing specific projects.

• Examples:

  • Include patients on existing quality committees or other groups that discuss quality issues.

• Resources:

  • Refer to Health Quality Ontario’s checklist, Chairing Meetings with Patient and Caregiver Advisors.

  • Refer to the Institute for Patient and Family-Centred Care’s Tips for Group Leaders and Facilitators on Involving Patients and Families on Committees and Task Forces.

8. Patients as Mentors

• When to use:

  • To provide skilled support and mentorship to other patient advisors.

  • To raise awareness among patients and caregivers about a quality improvement initiative.

• Examples:

  • Recruit participants for a person-to-person awareness campaign (e.g., health care providers/volunteers striking up conversations in waiting areas or setting up booths).

  • Match peer mentors with new advisors to provide guidance and support.

• Resources:

  • Refer to the Institute for Patient and Family Centered Care’s resources about peer mentoring.

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This list is not exhaustive. For more resources on patient engagement methods and practices, visit Health Quality Ontario’s growing online hub of leading patient engagement tools and resources. The library offers you a range of tools and resources to help you plan, do and evaluate patient engagement in your quality improvement work.

One resource that includes many examples of successful practices in patient engagement in Ontario is Health Quality Ontario’s report, Engaging with Patients: Stories and Successes from the 2015/16 Quality Improvement Plans. This report summarizes the practices related to patient engagement described in the 2015/16 QIPs submitted by hospitals, interprofessional primary care organizations, long-term care homes, and community care access centres across Ontario.

Another valuable resource is the landmark work done over the past five years in Ontario by the Change Foundation through their PANORAMA project. PANORAMA was a standing panel of 31 Ontario residents exchanging views, experiences and advice that helped The Change Foundation in its work to improve the patient/caregiver experience. Refer to Rules of Engagement: Lessons from PANORAMA for a robust list of methods of engagement, each described in detail. The Change Foundation also hosts a Caregiver Resource Hub that includes many useful resources.

Plan carefully to protect patient advisors’ privacy

When you engage patients in some aspects of quality improvement, you will hear their personal stories and experiences. These stories may be considered personal health information, and you will need to ensure they are treated as such. If applicable, we encourage health care organizations to consult their legal teams and privacy officers before engaging with patients in order to clarify their privacy obligations and requirements.

Ask some key questions while planning your engagement efforts:

• Determine what personal health information, if any, you need to collect for a successful engagement initiative. To minimize risk, it is always best to collect as little identifiable personal health information as possible.

• De-identify the information or aggregate it before putting it in your report. For example, in a one-on-one debrief with patient advisors, or during group discussions, you may be able to note themes and comments rather than attributing feedback to a specific patient. Feedback surveys can be conducted anonymously.

• Decide how you will use the patient information, and with whom you will share it. For example, if you will be creating reports for your senior management team, consider ahead of time the information you will want to include. You may also want to use patient feedback in public marketing materials, in training materials for health care providers, or as a means of responding to someone about a specific complaint.

• If you intend to use identifiable information, obtain patient consent for all of the ways you may use that information. For example, if you want to share a patient story in a board meeting or in health care provider training materials, describe these plans on the consent form so that patients are aware of the different ways their story will be shared. It is also best practice to follow up and ask permission each time you intend to use their story, even if you already have written consent.

• Communicate clearly with patients about what information will be shared, with whom, and for what purpose. Patients may be concerned about information getting back to their provider and how this might impact their care. In addition to obtaining written consent from patients, you should have a full discussion of any concerns they may have around these issues. Remind patient advisors that they can withdraw their consent at any time.

However you present your findings, remember to take steps to ensure that you have patients’ permission in writing if they are going to be identified, and that they understand and appreciate any possible implications of this information being shared.

 

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Recruiting patients to be involved

You should already have an idea of your target population by the time you are ready to reach out and begin recruiting patient advisors. Thus, your means of extending the invitation to participate will depend on your target population.

How to reach out

Clear communication via multiple methods will go a long way to ensure that patients feel welcome and are prepared to participate. Consider the following methods:

• Written material (e.g., posters, handouts, a notice in a newsletter)

• Phone calls

• Emails

• In-person invitations from care providers

• In-person invitations from volunteers

• Social media

If your organization is unsure about how to recruit patients and caregivers from specific populations you wish to engage, consider reaching out or partnering with local community organizations or social service agencies to recruit people who may face barriers to participation, such as those from cultural or linguistic minority groups, people with lower incomes, parents of young children, people with disabilities, or the frail elderly. Community and social service organizations that work regularly with these populations can provide valuable insight into how to reach out effectively and reduce barriers to participation.

For some quality improvement projects, specific skill sets may be required, such as the ability to read or computer skills. However, effective engagement is optimized if the participants reflect the diversity of your target population for engagement. Diverse representation ensures that the decisions being made reflect and respond to a broad range of lived experiences. Refer to Health Quality Ontario’s guide to Recruiting for Diversity for helpful tips and practices. The Ministry of Health and Long-Term Care’s Health Equity Impact Assessment Tool can also help to guide this discussion.

In your invitations to participants, provide an overview of the goals of the project or initiative, the specific contributions expected from participants, and the time commitment required. Be careful with patient advisor contact information on email distribution lists.

Consider recruiting experienced participants

Consider recruiting one or more participants who have previous experience acting as advisors. In particular, advisors who have experience working with a leadership role or who have worked on quality committees/quality initiatives and understand process improvement would be a good choice to co-lead your team. These advisors will understand the purpose of your engagement process and can help design a process that meets the needs of other patients and their caregivers. They may also be able to act as mentors for less experienced advisors on the team.

Recruiting for diversity

Recruiting participants who are representative of the target population can be challenging. Paradoxically, many of the most “open” methods of reaching and recruiting participants (posters and handouts, for example) engage only a sliver of the patient and caregiver population – those who have the time and capacity to put themselves forward as volunteers. While it is good practice to include a way for any interested individual to find out about your engagement initiative, be sure to also find ways of involving those who may otherwise face barriers to participation. Active, targeted methods of recruitment can help build a diverse participant pool.

If your organization is unsure about how to recruit patients and caregivers from specific populations you wish to engage, consider reaching out or partnering with local community organizations or social service agencies to recruit people who may face barriers to participation, such as those from cultural or linguistic minority groups, people with lower incomes, parents of young children, people with disabilities, or the frail elderly. Community and social service organizations that work regularly with these populations can provide valuable insight into how to reach out effectively and reduce barriers to participation.

For some quality improvement projects, specific skill sets may be required, such as the ability to read or computer skills. However, effective engagement is optimized if the participants reflect the diversity of your target population for engagement. Diverse representation ensures that the decisions being made reflect and respond to a broad range of lived experiences. Refer to Health Quality Ontario’s guide to Recruiting for Diversity for helpful tips and practices. The Ministry of Health and Long-Term Care’s Health Equity Impact Assessment Tool can also help to guide this discussion.

In your invitations to participants, provide an overview of the goals of the project or initiative, the specific contributions expected from participants, and the time commitment required. Be careful with patient advisor contact information on email distribution lists.

Consider recruiting experienced participants

Consider recruiting one or more participants who have previous experience acting as advisors. In particular, advisors who have experience working with a leadership role or who have worked on quality committees/quality initiatives and understand process improvement would be a good choice to co-lead your team. These advisors will understand the purpose of your engagement process and can help design a process that meets the needs of other patients and their caregivers. They may also be able to act as mentors for less experienced advisors on the team.

Working with patient advisors on quality improvement initiatives: Identifying the problem, understanding your system, and designing and testing solutions

This section includes a practical explanation of what to do once you have identified your team members, engaged the patient advisors who will be on your team, and begun to identify your area of focus for quality improvement. During this part of the initiative, you will follow three steps in the Quality Improvement Framework, along with your patient advisors: Defining the Problem, Understanding your System, and Designing and Testing Solutions.

Phase 3. Understanding your system:

During this phase, teams collect and analyze data related to the problems identified in Phase 2. As the team learns about the performance of its system, it will also identify clues about the barriers to better performance that exist within the system.

Phase 4. Designing and testing solutions:

Once there is a clear understanding of the opportunities for improvement, teams can begin developing plans and testing ideas. This is an exciting phase that provides teams the opportunity to exercise creativity and challenge the status quo by trying different improvement ideas.

GETTING STARTED | DEFINING THE PROBLEM | UNDERSTANDING YOUR SYSTEM | DESIGNING AND TESTING SOLUTIONS | IMPLEMENTING AND SUSTAINING CHANGES | SPREADING CHANGE

Health Quality Ontario | Engaging with Patients and Caregivers about Quality Improvement: A Guide for Health Care Providers 23

Helping your patient advisors prepare to work on quality improvement initiatives

Educate your patient advisors

Patient advisors need to be provided with background information if they are going to partner or co-lead a quality improvement initiative. Remember that your patient advisors are experts in their own lived experience, but may not necessarily be experts in health policy or quality improvement science. Provide them with background readings to prepare for any meetings, being sure to provide any materials far enough in advance that they will have time to read them, and offer to review these materials with them. Less experienced members of the team from within your organization may also find the same training and support to be useful.

• In collaboration with our patient advisors, Health Quality Ontario has produced a short tip sheet for patients and caregivers on getting involved in quality improvement. This is provided as Appendix 1 in this guide. Consider distributing this to your patient advisors when they join your team.
• Present your patients with an introduction to quality improvement, focusing on the methodology that will be used in your project (e.g., Lean, Six Sigma).

patient advisors on QIPs. An introduction to QIPs intended for patient advisors is presented in Appendix 2.

• Provide any necessary information related to your specific quality improvement initiative, if you have already chosen one.

Allow for multiple channels of communication throughout the engagement process

Patient advisors may have questions or feedback that they wish to discuss outside of a group setting, and it’s important to allow them this opportunity. Share the email address and telephone number of the point person on your team with your patient advisors (with consent), and let them know that questions or feedback are welcome at any time. The point person can involve the other members of the team if the conversation relates to their role.

Tips for organizing meetings to involve, collaborate with, and partner with patients

Partnering with patient advisors will enable your organization to plan a more meaningful and effective engagement process. But if you have not worked with patients advisors in this kind of partnership role before, the prospect may seem challenging. In practice, there are a few simple things that will go a long way to helping a team of patient advisors and health care providers to work together successfully.

Address potential barriers

• Financial:
  • Financial barriers should be removed to enable patient advisors from all backgrounds to be involved in the project. This may include covering child or elder care, parking, travel, and accommodation.
  • Prepare the organization to support this work with the appropriate policies and procedures so that patients who choose to become involved have a clear understanding of the nature of the support you can provide.
• Timing:
  • Plan meetings at convenient times. Evenings and weekends often work better than regular working hours, but it’s always best to work with your advisors to find the best times for everyone.
  • Consider lengths of meetings – do not overtax patients with a long session, and include lots of breaks.
• Accessibility:
  • Ensure that meeting locations are physically accessible.
  • Offer supports for those who may be hearing or visually impaired.
  • Ensure that translation services are available if they are needed.
  • Simplify written materials for ease of reading and comprehension.
  • Refer to the Government of Ontario’s resources for planning an accessible meeting.
  • Offer the ability to participate remotely.
  • Be mindful of furniture (desks, chairs, computer screens) that may be perceived as a barrier between participants.
  •  

Setting the atmosphere during the meeting(s)

• Keep the atmosphere informal and friendly.

• Avoid the use of titles, acronyms, and medical or administrative terminology as much as possible.

• At the beginning of the meeting, ask individual team members to introduce themselves and describe who they are and why they are participating. Do not forget that, as the health care provider, you are a key member of the team and should include yourself in the introductions.

• Take the time to get to know each other, tell stories, and share information about where you are coming from in order to build positive personal relationships on your team.

• Affirm that differences in perspectives and opinions are welcome.

• Assure participants that sharing their perspectives and opinions will not affect current or future treatment for themselves or their caregivers.

• Create a meeting environment that allows space for everyone at the table to contribute.

• Build an agenda that includes discussion around patient experience and better quality of care.

• Engage in joint learning as a team – about how your organization’s quality improvement process works, quality improvement best practices, and the hopes and concerns that the team has about the work ahead.

• Make time to discuss privacy concerns in person. You may need to reiterate to your advisors that their personal information will not be shared without their permission, and that they should not share others’ stories outside of the group.

• Check in frequently

  • Continuously evaluate your engagement process as it plays out.

  • Keep checking in on skill sets and team building; identify gaps and strengthen them.

  • Assess whether the right people are on the team and resources are assigned appropriately.

  • Ask participants frequently whether they have any questions or would like more information on a particular topic.

  • Consider pre-meeting briefs and post-meeting debriefs to ensure patients’ needs are being met and questions are being addressed.

  Avoid potential pitfalls

  • Focus is important, but don’t narrow your focus so much that patients can’t contribute what they think is most important. If you are aware of a major issue or concern that patient advisors are likely to bring up, focus your engagement initiative in a way that allows them to discuss it. If you have a good reason to put a particular priority to the side, be sure to explain why you have decided to do so.

  • Try not to focus your engagement initiative on an issue you already know how to resolve. Participants are likely to be frustrated if you have a plan of action and are simply coming to them for a “rubber stamp”.

  • Avoid becoming defensive. Health care providers should help clarify misunderstandings and offer explanations when asked, but such explanations must be provided carefully to create an environment that welcomes feedback.

24 Engaging with Patients and Caregivers about Quality Improvement: A Guide for Health Care Providers | Health Quality Ontario

Create a measurement plan for spread Patients who remain interested and invested in the project will be enthusiastic about measuring spread

GETTING STARTED | DEFINING THE PROBLEM | UNDERSTANDING YOUR SYSTEM | DESIGNING AND TESTING SOLUTIONS | IMPLEMENTING AND SUSTAINING CHANGES | SPREADING CHANGE

28 Engaging with Patients and Caregivers about Quality Improvement: A Guide for Health Care Providers | Health Quality Ontario

Tips for evolving your patient engagement process as the quality improvement initiative matures

The improvement team needs to pause, celebrate, and explore the strengths and weaknesses of the initial engagement. With the experience of the project, the team and patient advisors who have been involved may be ready for a more robust and mature approach. This can also be a key time to reach out to current and new members, both health care providers and patients, to establish continued interest, test the waters in case the team is fatigued, or look for people with new skill sets that are needed to move forward.

• Some members will be ready to retire from the initiative (both staff and patients).
• Some may want to step back or be involved in a different way in spreading the initiative (both staff and patients).
• Does the team need some focused training to achieve the scale up? What is the inventory of skill sets and resources on the existing team, and are there any gaps?
• Consider the readiness of the organization and the patient advisors involved to increase the participation from patients in the ongoing development of the initiative given the new parameters, and determine the need for new membership.
• Are there new skill sets needed to move forward? It may be necessary to adjust the recruiting strategy for both staff and patient advisors on the team.
• Send regular updates to participants to reaffirm that your organization takes their feedback seriously.
• Commit to re-engagement in the future, and to adding new methods of engagement.
• Members who are no longer active can continue to provide valuable feedback and advice on an ad hoc basis. Ensure that you have their input and offer them opportunities to remain involved.

Evaluate your work and commit to re-engagement

Be sure to take time in the six months after the engagement initiative to gather your team, review activities, celebrate achievements, discuss shortcomings, and brainstorm about further improvements. This includes taking the opportunity to ask advisors about their experiences as patient advisors, and whether they felt their time was used well. To capture this experience, refer to a helpful evaluation called the Public and Patient Engagement Evaluation Tool (PPEET), developed by the PPEET Research Practice collaborative, a pan-Canadian partnership of practitioners and researchers that is funded by the Canadian Institutes of Health Research. Quality is a journey and requires ongoing monitoring and course correction. Make sure to document your suggestions so that the evolving team can learn from the work.

Participants often deeply appreciate updates every four to six months, and sending updates can help reaffirm that your organization takes their feedback seriously. Commit to re-engagement at some point in the future, and re-confirm with leadership at your organization that they are supportive of this. This isn’t meant to be onerous; depending on the size of your initiative, it might be reasonable to wait a number of years before making another significant effort to approach patients and caregivers. However, if you plan to wait a while, consider an interim check-in of some sort with your organization’s patient and caregiver advisory council about how any changes you have implemented are working.

When you do re-engage with patient advisors about your organization’s approach to quality improvement, it may be tempting to simply repeat the methods you developed the first time around, but try to avoid this and add a new method of engagement. The chance that you’ll learn something new increases greatly when you engage with patient advisors in a new way.

Health Quality Ontario | Engaging with Patients and Caregivers about Quality Improvement: A Guide for Health Care Providers 29

Report on your results

Plan ahead

You will need to work out in advance how the results of your engagement initiative will be documented and shared within the organization, with the patient advisors who participated in your initiative, and potentially with the broader community served by your organization. Engagement initiatives are different from other forms of qualitative research, partly because they include an up-front commitment to share information about the process and the results with participants and, potentially, with the public. Plan to share your results even if the project was not successful in achieving your original goals – the lessons you learned are important as well.

Final report

Consider releasing a short summary report that describes how your organization has involved patients in your quality improvement initiatives. This communicating of results keeps the momentum going for further improvements that are generated through the engagement of patients. You could also highlight any future opportunities for involvement here. This can be a stand alone report, or an article in your organization’s newsletter or on its website. You may wish to include the following sections in the report:

• Provide a short introduction that thanks participants, describes how your organization values patient/caregiver input, and highlights what was learned during the process.
• Describe how you engaged with patient advisors, including the methods you chose and the steps you took.
• Summarize the issues raised, lessons learned, and recommendations put forward. It is okay to describe conflicting perspectives that were not resolved during the process.
• Explain the actions your organization will take in the near future and provide timelines if possible. Point out that not every recommendation can be implemented right away, and that you will revisit remaining recommendations in the future (committing to future consultation is a good way to maintain trust).

Case Example: Health Quality Ontario’s experience with engaging patients to prepare this Guide

To illustrate how some of the steps and concepts in this toolkit can be applied, Health Quality Ontario has included a case example of how patients were involved in the development of this guide.

Background: This Guide was conceived as a collaborative effort between two separate branches of Health Quality Ontario: the Quality Improvement Plan Program and the Patient, Public and Caregiver Engagement department.

Health Quality Ontario | Engaging with Patients and Caregivers about Quality Improvement: A Guide for Health Care Providers 35

Understanding your System

Begin to analyze the data your team has collected that relates to the priority areas. Begin to set targets for the coming year using information from sources such as evidence-based literature, service accountability agreements, current provincial data such as that provided in Measuring Up, and your organization’s historical data. Be sure to share the above-mentioned documents and discuss what targets resonate with your patient advisors. Brainstorm improvement opportunities and change ideas that you will test over the coming year. Begin writing the Narrative portion of your QIP, in collaboration with your patient advisors. This section should reveal a true commitment to quality improvement and patient engagement, and should be written in language that resonates with patients, caregivers, and the public.

Designing and Testing Solutions

Refine the change ideas that you have generated and write them up as improvement initiatives in your QIP. If patient advisors will be included in implementing, sustaining and spreading these change ideas, be sure to include descriptions of how they will be engaged. Write up your change ideas in the Workplan section of the QIP. Once the Workplan is completed, take the necessary steps to have the QIP reviewed, approved, and submitted to Health Quality Ontario by April 1 each year. Begin testing the change ideas described in your QIP. Keep patient advisors involved in the testing of change ideas, checking in regularly to ensure that the changes are resonating with them. Share your results widely, including stories of challenges and successes. Set up measurement systems to continuously monitor progress.

Implementing and Sustaining Changes

Formalize and standardize successful change ideas into policies/procedures, orientation documents, job descriptions, and education programs. Document new processes. Continue to adhere to your ongoing measurement plan to track performance. Discuss lessons learned with staff and patient/family councils. Share improvement stories and evaluate their impact and any feedback from patients. Create a plan for spreading changes that have been successful – for example, to other units, departments, or practices – and continue to monitor your progress toward the goals in the QIP.

Spreading Change

Document your system for monitoring performance and the achievement of any commitments/priorities established in the QIP. Implement your plan for spreading successful changes. Communicate broadly, including by posting your QIP on your organization’s home page and referring patients to the document. Your patient advisors may be champions of your successes and integral to your communications about your successes. As you implement change ideas and process measures throughout the year...

36 Engaging with Patients and Caregivers about Quality Improvement: A Guide for Health Care Providers | Health Quality Ontario

Glossary

For Ontario’s health care system, the term patient, public, and caregiver engagement (abbreviated as patient engagement throughout this guide) refers to an activity that:

a) Is primarily undertaken by a care provider, organization or policy maker;

b) Includes real contribution and participation from patients, caregivers, or members of the public;

c) Results in improvements in the quality of care;

d) Increases or sustains patient, caregiver, or public trust; and

e) Uses the most appropriate public engagement approach or combination of approaches (sharing, consulting, deliberating, or collaborating) depending on the issue or situation.

In this guide, we...

Health Quality Ontario | Engaging with Patients and Caregivers about Quality Improvement: A Guide for Health Care Providers 37

References

1. Armstrong N, Herbert G, Aveling E, Dixon-Woods M, Martin G. Optimizing patient involvement in quality improvement. Health Expect 2013;16:e36-e47.
2. Pomey M, Hihat H, Khalifa M, Lebel P, Néron A. Patient partnership in quality improvement of healthcare services: Patients’ inputs and challenges faced. Patient Experience Journal 2015;2(1):29-42.
3. Boivin A, Lehoux P, Lacombe R, Burgers J, Grol R. Involving patients in setting priorities for healthcare improvement: a cluster randomized trial. Implement Sci 2014;9:24.
4. Renedo A, Marston CA, Spyridonidis D, Barlow J. Patient and Public Involvement in Healthcare Quality Improvement: How organizations can help patients and professionals to collaborate. Public Management Review 2015;17(1):17-34.
5. Roseman D, Osborne-Stafsnes J, Helwig Amy C, Boslaugh S, Slate-Miller K. Early...

40 Engaging with Patients and Caregivers about Quality Improvement: A Guide for Health Care Providers | Health Quality Ontario

Important Things to Know:

• Be Mindful of Privacy – A lot of details are shared during QIP meetings. If you want to share details about your experiences that should not be recorded or repeated outside of a meeting, make this clear beforehand. Staff may ask you to sign a confidentiality (privacy) agreement before you can access some of the information about the organization. This means you will be asked not to share any private details that you learn during meetings.
• Not All Input Is Used – Your input is meaningful. But it’s important to know that health care organizations may be limited in what they can do with it....

Acknowledgements

This guide was developed by a multidisciplinary team of patient advisors and staff, including Jill Adolphe, Kerri Bennett, Judy Berger, Corey Bernard, Katherine Chan, Randy E Davidson, Laurie Dunn, Raymond L Frank, Janice Gilners, Sydney Graham, Kathy Greiner, Lee Fairclough, Emily Hayes, Bill Holling, Betty-Lou Kristy, Sudha Kutty, Nicole Lafreniere-Davis, Amy Lang, Claude Lurette, Marjanne Lyn, Danyal Martin, Margaret Millward, Anthony Moscar, Susan Paddick, Jennifer Schipper, Aman Sium, Gene Szabo, Laura Williams, and four other patient advisors, who are thanked very much.

Health Quality Ontario also acknowledges and thanks the following associations for their contributions to this guide: the Ontario Long-Term Care Association, the Ontario Association of Community Care Access Centres, the Ontario Association of Non-Profit Homes & Services for Seniors, the Ontario Hospital Association, the Association of Family Health Teams of Ontario, and the Association of Ontario Health Centres.