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Diane Mckenzie and Jennifer Schipper

Patient partnering: A blossoming movement

A Conversation with patient advisor Diane McKenzie and Chief of Communications and Patient Partnering, Jennifer Schipper

Diane McKenzie: Patient partnering means building deeper, long-term relationships with health care professionals that lead to improved health care quality. This work is about challenges that need to be overcome. By working through those challenges – together – patients and organizations can make dramatic changes. It’s not easy. But together we are better when we are done.

Jennifer Schipper: When I first started at Health Quality Ontario more than four years ago, I was keen to “engage” patients and find out how we could work together.

One of my first meetings was with the founding president of Patient’s Canada, Sholom Glouberman, who told me: “Jennifer, patients don’t want to be engaged when it comes to health care improvement, they want to be married.”

Sholom’s phrase and sentiment has stayed with me ever since and has helped guide how Health Quality Ontario is working to help patients, health care professionals and organizations truly partner to effectively improve the quality of health care.

The speed at which this is occurring and the associated changes in language about this trend can be overwhelming to those who are not directly involved. For example, the concept of ‘patient engagement’ which was so dominant so recently, has largely been replaced by the more proactive concept of partnership.

DM: As a patient partner, I feel like the right language has just arrived. Everywhere. Organizations seem ready for this, even if some of their staff need time to get their heads around what partnering with patients means.

JS: In fact, patients do not seem afraid to call out instances of tokenism or lip-service when involving them in health care improvement. Instead, they are calling for meaningful partnerships with them to improve health care quality because it can only strengthen the quality of decisions made due to the insights and unique perspectives they bring to the table.

At Health Quality Ontario too, we have not been afraid to state that partnering with patients is essential in developing a quality health system.

DM: Patient partnering work can be both terrific and challenging as we all learn to do the right thing together. By speaking in an open and transparent way, we can work through our most difficult challenges.

JS: A recent commentary in CMAJ, former President and CEO Dr. Joshua Tepper and the VP of Evidence Development and Standards Dr. Irfan Dhalla stated that involving patients at the system level in decisions about what services should be offered is in its infancy in Canada but that “involving patients, and the public, increases the legitimacy of decision-making and will improve the quality of the decisions made.”

DM: In fact, leadership support within organizations for this kind of work is critical because it allows patient partners to have comfort/ confidence when tensions and resistance are high, knowing that some of their ideas will move forward, even if it takes time.

JS: Similarly, in his final blog post as CEO of Health Quality Ontario last month, Dr. Tepper wrote that “partnering with patients has to be part of the improvement process in health care.”

This is not necessarily easy work. While partnering with patients is an easy concept to endorse, it is not always easy to put into effect – especially with a need to involve patients with diverse levels of knowledge and capabilities and to ensure those from disadvantaged groups are properly represented.

DM: The journey toward a fully person-centred care organization is long and there are challenges. However, patients believe we can successfully work on these challenges with health care professionals together, through open and transparent dialogue, a laser focus on person-centred care, unwavering support from the organization and an openness to new ideas. I truly believe this type of partnership in care will ultimately lead to better outcomes for all.


JS: Health Quality Ontario has acknowledged the challenges of patient partnering and has curated and designed a number of tools and resources to empower patients and health care providers to build their capacity to effectively partner to improve care.

We and patient advisors like yourself are certainly not alone in acknowledging the importance of partnering with patients in Ontario. Indeed, the topic formed a significant part of the first Facebook Live chat recently between University Health Network President Dr. Kevin Smith and Professor Adalsteinn Brown, Dean of the Dalla Lana School of Public Health at the University of Toronto.

In that chat, Dr. Smith talked about the importance of improving the patient experience and Professor Brown said it was important to talk more with patients and their caregivers to improve how patients transition through the health care system. Professor Brown also said it was important to find a way to listen more effectively to what patients are saying so the quality of the system can be improved.

DM: Imagine the actions that could happen when health care providers truly listen to patients’ insights and piece together a solution based on their partnership in care?

JS: Imagine indeed. Ontario is building a strong, shared culture of patient, caregiver and public partnership where patients, health care providers and policy-makers understand how partnership leads to high quality care.

Once upon a time, not too long ago, health care professionals did things “to” patients and health care planners did things “for” patients.

DM: The result was a system that stood still in time, disconnected from the people it served and a system in which quality/outcomes declined.

JS: Now we are truly part of an era where both health care providers and planners are working “with” patients. And the system can’t help but improve as a result.

DM: With patients-as-partners, we are turning it around. Quickly.

* Please note, ‘patients’ refer to people being cared for in hospitals, through community programs, in their homes (including long-term care homes), as well as families and other public caregivers.

Diane McKenzie is a patient advisor for Health Quality Ontario and other organizations in Ontario and Jennifer Schipper is Chief of Communications and Patient Partnering at Health Quality Ontario

 

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6 comments on article "Patient partnering: A blossoming movement"

Bill Holling

To keep advisors they need to be engaged and needed to be treated as some one. They need to be challenged and see results tangible results not theory

Reply to

Jennifer Schipper

Thanks for this. You make a relevant and important point

Reply to

Denyse Lynch

As a Patient Advisor who has had several experiences with Patient Engagements, I would like to hear of examples of experiences that "exemplify partnering" from the perspectives of both parties -We keep talking about and hearing about partnering; we are using the right language, but what does it comprise? Examples of what I'd like to know: How is the decision made & by whom "to engage" a PA (other than the team can't get funding for their project without it?)? What determines, is the criteria for the number of PA's involved on a project? Have QI or research project leaders, team members been oriented, know the benefits of "how to" partner with PA's? Do they possess the skills/competencies they will need to partner with PAs? What training education/skills are provided so they develop the skills? What typically are the number of partnering experiences, the project leader and team members have to have ? Do Project leaders, team members know what they want to achieve with and expect from PAs? How is this shared, articulated to the potential PA's? What feedback from PA's would be considered as value-added to the project about their involvement?

Other than PA's with "long lived experiences within the health system" (is there any other kind?) what skills, qualities do project leaders, team members see as needed by PA's in order to partner? What orientation & training, knowledge, skills are provided to PAs, so they can participate effectively as partners? At what stage of the project are PAs invited to participate in the engagement and why that stage? How is this decision made and by whom? Are PAs ever asked or, will they be asked their perspectives about what they'd select as an engagement initiative? Why or why not? Do PA's ever lead the initiative? What decision-making do PA's participate in on a project? How is this of value to the project?

Are mentors, a buddy, assigned to the PA's to be a contact point for questions and keeping the PA in frequent contact as to the nature of processes/activities going on behind the scenes when they PA's) are not actively participating?

Are PA"S kept in the loop as to what next steps are in the project, how their participation contributes to the outcome benefits? How frequently are PA's asked to provide feedback on the partnering process/ status of the project? Who provides and how frequently is feedback provided to the PA's re their contributions? What specific feedback would be provided to PA's?

Is there a checklist, for "how to partner" that can be provided PA's and QI, Health Improvement project leaders, team members? I've seen the QI checklists but they are insufficient and/or, not well monitored or, implemented. Every group seems to do their own thing. The checklist, is a suggestion that if shared would: 1) Provide consistency of approach for all involved, save time 2) Enable individuals to develop their own personal development & improvement plan 3) Be a consistent approach to Improving Health Care across all initiatives 4) Would also promote better relationships and of course, save $$.

My own Patient Engagement experiences are mixed, because I have not found consistency on the teams in the engagements in which I have participated. Look forward to exploring this topic further.

Thank you. Denyse PA

Reply to

Jennifer Schipper

Thank you for your feedback. You pose some really good questions, that speak to best practices. At Health Quality Ontario we do our best to follow the best practices such as asking patient & caregiver partners how they would like to partner with us, offering training & coaching to our staff and patient partners, keeping people informed about the outcomes of a project, and evaluating our work. We welcome feedback from patients partners about how we can do better.

Reply to

Denyse Lynch

Thank you Jennifer, I agree HQO has developed best practices for working with PA's. And I, as a PA, expected all researchers working with PA's would have adopted, learned & shared these with PA's for quality engagements, yielding quality improvements....these are, after all, BEST PRACTICES, to which many people at HQ invested time and their intellectual capital. HQO is using the BEST PRACTICES and so your answer has prompted other questions. They now are:

1) what information did the research organizations receive about their responsibility to use HQO BEST PRACTICES?. Are they not all expected to use them? Is this not why they were developed? So all research orgs. would use them, and be consistent in their approach to working with PA's? Imagine if medical professionals all adopted different practices, protocols to treating patients?Best Practices need to be consistent across the system.

2) Who- title/role in the research organizations were responsible for ensuring their project teams were educated/informed about the BEST PRACTICES and were deemed to have the appropriate skills & if not, were they trained in them? If people aren't informed, advised and coached to adopt these how can they work at THEIR BEST & give PA's the BEST in terms of education/experiences in working together to improve the health care system?

We all know the health system is silo-ed, one of the biggest challenges of being a patient/caregiver. WE PA's, patients/caregivers are EXPERT in our experiences and we NEED, EXPECT the research organizations we work with to have the best competencies and be consistent as this is the means to effect quality improvements. The definition of "Quality is conformance to Best Practices, standards".

I would really like to understand how the BEST PRACTICES are supposed to work across the system and to whom PA's can provide feedback when HQO Best Practices are not being implemented or, are being ineffectively implemented.

I look very much forward to learning about this.

Sincerely,

Denyse

Reply to

Jennifer Schipper

Thank you Denyse for your thoughtful comments. We indeed hope all who are partnering with patients are using the tools and resources that we share on our website and through other means. We put a lot of effort into promoting them and are constantly sharing them across the system Our role is one of a coach, helping patients and health care professionals find ways to effectively engage with each other to improve health care quality. Each day, we see more patients and professionals building new and deeper relationships to improve health care quality. It can sometimes be slow, but the rewards are worth it. If you have questions about patient partnering in research, you may want to reach out to the Ontario SPOR support unit who are promoting patient partnerships in research.

All the best,

Jennifer

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