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July 2015
The patient-doctor relationship: What matters most
Jul 22, 2015 11:00 AM

This is part of our 'Impact' series, where we unpack the context and opportunity for our work, and what it means to patients, family caregivers and the healthcare community across Canada.

What's important to you in your relationship with your family doctor? We partnered with the Association of Family Health Teams of Ontario (AFHTO) to help them answer that question. We started with a survey, "Value in the Patient-Doctor Relationship," which we helped them develop and share in March 2015. Many of you participated – thank you – and may be curious about the results. We are, too!

We sat down with Carol Mulder, AFHTO's Provincial Lead of Quality Improvement & Decision Support Program, to unpack the survey's significance and how its results can lead to an improved patient experience.

Can you tell us about the project and how it came to be?

Carol: The survey that we developed with help from Patients Canada, ‘Value in the Patient-Doctor Relationship’, is part of our larger quality improvement project, Data to Decisions (D2D). Centred on team-based performance measurement, we’re working with our member Family Health Teams (FHTs) and Nurse Practitioner-Led Clinics (NPLCs) to develop a report they can use to measure what matters in their efforts to improve care.

This project really reflects our general approach to performance measurement in primary care. Among the principles important to a good primary care system is that it’s comprehensive, patient-centred and based on a continuing relationship between patients and their providers. So, that’s where we started.

We needed to measure in a way that aligns with those principles and, ultimately, in a way that reflects that very important patient-doctor relationship. We had to find out what’s important to patients within the context of their relationship to their provider, which is the basis for our partnering with Patients Canada on this project.

I’ll first tell you a bit about the process. As well as it being a personal philosophy of mine, our partnership flowed from our 2014 conference, In Partnership with Patients: True Integration of Care, where the theme was patient involvement. Patients Canada was very involved in that conference: they guided the plenaries, they helped set the tone for constructive dialogue and Sholom Glouberman, Founder of Patients Canada, was our keynote speaker.

Coming out of that there was a lot of discussion around what it actually means to have patient participation – you can’t involve patients meaningfully by asking them, "is this what you like?" just before you press the ‘send’ button.

It was Sholom who recommended working together to identify what measures of primary care performance matter to patients. That’s how we came to the idea of creating a survey for patients. After our first meeting with Patients Canada’s Key Performance Targets (KPTs) working group we noticed a shift in how we thought about the survey. We saw the value in writing and designing the survey questions together, and in integrating the KPTs as they are patient-driven measures of what constitutes patient and family-centred care.

How do you think the project benefited from involving the patient perspective?

Carol: We had an idea of what we wanted, but when working really closely with something, you are sometimes unaware of how others see it. Patients Canada’s Patient Advisors and KPT working group helped us understand the crux of what we were looking for. There were a few iterations, as we needed to make the language more accessible to diverse patient populations. Ultimately they helped us identify which measures of primary care performance should be included in the survey. They also provided helpful direction for wording the questions.

Patients Canada was instrumental in the survey’s successful response rate – three quarters of responses came from Patients Canada’s channels! There’s credibility around having Patients Canada facilitate the connection because it wasn’t a matter of simply putting the Patients Canada name on the survey – there was genuine engagement as opposed to a traditional top-down approach, which can be token. The large number of responses shows that it’s a fairly workable survey, and that it’s something that Patients Canada felt good about distributing to its membership.

So what did you learn from surveying patients and family caregivers?

Carol: The results show that a vast majority of patients want a relationship with their primary care doctor. This makes the point that it’s worthwhile asking patients what they want in a partnership because they do want a partnership. This establishes the rationale, the need and why it’s useful to check with patients about what’s important.

Of all the measures, the most important to the patient-doctor partnership are

  • The extent to which patients are involved in decision-making;
  • The amount of time spent together;
  • And how seriously the doctor took the patients feelings and concerns and was willing to work with them

I’ll add that none of the measures in the survey were considered not important by participants. They range in terms of importance but none are unimportant. This is a useful observation because there’s sometimes this fear that there’s what the patient wants on the one hand and what the doctor wants on the other, so they’re competing. But there’s back and forth, like any relationship.

Why should this matter to patients?

Carol: It makes it possible to bake patient expectations right into the “hard data” used to measure performance in primary care. We probably will always need and want patient stories to put these measures in context. However, with the survey results, we no longer need to choose between “hard data” and “patient stories” to decide how well we are doing in primary care. We're now able to calculate an overall roll-up measure of quality which gives weights to the particular aspects of care that matter most to patients.

This is all really new work. In fact, the actual math of calculating this roll-up measure (which is a composite of many individual indicators) is still a work in progress. However, thanks to the survey, we are now nicely started on a journey towards measuring primary care in a way that helps us understand what's important to both providers and patients.

How will you move forward with this project and primary care measurement generally?

Carol: We’re very much in the early days of this, conceptually, but this was an important and good first step. In the future we’re going to seek insight from patients on the equally important follow-up question, "in what way is this important to you?”

In addition, we’ll continue with the math work to calibrate our measures to make sure our continued focus is on what’s important to patients. We’ll be looking to other patient groups to see if expectations are different between groups or areas of the province. We also plan to expand the scope of information about patient expectations by looking at the relationship between patients and other providers, not just doctors. Measurement in primary care is one of AFHTO’s key strategic priorities. We are so grateful to Patients Canada for their help in keeping the focus on patients and their families as we move forward in this work.

ALL, Our Impact, Patient-centred measures  
June 2015

Becoming a Patient Advocate: Dr. Robin McGee
Jun 1, 2015 12:00 PM

This is part of our 'Spotlight' series, where we shed light on some of the amazing work being done by informed patients and family caregivers from across Canada.

Dr. Robin McGee is a registered Clinical Psychologist, author of the International Book Awards 2015 finalist, "The Cancer Olympics," and an active Patient Advocate in the area of advancing best practice treatment and care for cancer patients. We spoke with Dr. McGee about her patient experience and what drove her to become involved in improving the patient experience in her community and beyond.

How did you come to understand that the patient experience had to change?

Dr. McGee: In my own case, I had an extremely negative experience. I have had very positive experiences as well, but this one was negative. I saw four doctors – three family physicians and a general surgeon – in my search for an explanation for my rectal bleeding. Despite my immediate family history of colorectal cancer, all four of those doctors dismissed and belittled my symptoms. By the time my cancer was detected, it was stage IIIc, with only a 33% chance of survival.

When the College of Physicians and Surgeons of Nova Scotia investigated my case, many errors of practice and communication were uncovered. The errors were several: failure to communicate with me and with each other, failure to read the past electronic medical records or test results, failure to recognize the significance or urgency of my symptoms, failure to respond to my appeals for help, failure to triage my case appropriately, and providing me with inaccurate information about wait times and alternatives. Each of the four doctors assumed some other doctor would take responsibility for my case; so in the end, none of them did. Not one of them used the “c-word” with me at any time, profoundly disempowering me.

Due to the inappropriate care of these doctors, my cancer treatment was delayed by two years. Diagnostic work that should have taken 60 days by practice guidelines took 661 days. The quality of care was dangerously poor. Many would not have survived a diagnostic delay that long. After my experience, I became determined to make a difference in cancer care so others would not have an experience like mine.

Can you share with us some of the ways that you partner to improve care?

Dr. McGee: I have participated as a patient representative on several provincial and national initiatives aimed at improving standards of cancer care, including diagnostic care. I joined five working groups through Cancer Care Nova Scotia that focus on improving standards of treatment and care - there's a group on the development of standards of treatment for colorectal cancer; oversight of standards development, patient engagement, and patient education; but most important was a working group on improving guidelines for detection and diagnosis that make it clear which symptoms demand prompt attention.

I'm also involved in a research project that's looking into managing cancer-related depression, fear, pain, fatigue, etc. I'm also a peer support mentor and fundraiser on behalf of the Canadian Cancer Society, and a member of Patients for Patient Safety Canada.

You sound busy! Does your perspective as a provider contribute to your patient engagement work?

Dr. McGee: Yes, I do believe that I had a unique experience, and that I have a unique perspective because of my professional background. I'm a big believer in patient engagement in working groups and, in fact, in every level of healthcare. In the words of the Borg from Star Trek: “Resistance is futile!” Patients must be engaged in every level of healthcare because we need patient engagement. It's happening now more than ever - it's the way of the future - and I have had countless experiences in which the patient perspective changed the way a decision was made, or changed the sensitivity with which a service is delivered. For example, I've witnessed the improvement of communication pathways between providers, specialists, and cancer patients who are in situations similar to mine.

How did your book, The Cancer Olympics, come to fruition?

Dr. McGee: I wanted to put a human face to how poor cancer diagnostic care results in suffering.  The Cancer Olympics is a story not only of a terrible diagnostic path, but it also sheds light on how the chemotherapy treatment for my kind of cancer was not available in my province. It was available in other areas of Canada, but not in Nova Scotia.

The community who had been supporting me through my harsh treatments turned to lobby the Ministry of Health to extend the formulary to include this best practice chemotherapy treatment. The province did eventually add this treatment to its formulary but it was too late for me to receive it. Also, the book relates my search for justice through the College of Physicians and Surgeons.

My book illustrates that patients have to advocate like crazy for their care, and for the care of others. I unpack my horrible care, what it feels like to suffer through cancer, my experience lobbying the government for a chemotherapy treatment, my search for accountability through the College, and the value of support from colleagues, friends, and loved ones. And it is a cracking good read, if I say so myself!

What is your vision for the future of patient and family-centred care in Canada?

Dr. McGee: I hope to see patient involvement in every level of decision making – on all health boards and quality councils, in protocol development, and in research projects. Here the motto "nothing about me, without me" applies.

Medicine has to get into 2015! Let's create more patient portals, let's make email communication available between patients and providers, and we need increased transparency in conduct among providers and patients, even at office visits. I'm a big fan of a doctor from Montana, he uses his laptop to project a patient's health records on his office walls - he actually co-creates the medical record with his patients. He’s respectful in his interactions and is totally open about inviting his patients to correct mistakes in their records and about letting them see referral letters.

We need to abandon the fax machine! We know that as many as 30% of referrals from family doctors to specialists go missing. It's time to move forward with electronic information and referral sharing.

How do you think organizations like Patients Canada help to bring the patient voice forward?

Dr. McGee: One of the things l like about Patients Canada is that they model what they talk about. I attended Patients Canada's 2013 annual conference on "Bringing the Patient Perspective to Healthcare", and worked alongside 200 people just like me! It was a room full of vocal activists who are bringing the patient experience forward from their own stories.

I had never ever met a Patient Advocate before this conference. When you're doing it all alone, you think you’re the only one. Then you go to Patients Canada, and you realize that this is inclusive. It empowered me for years! One dose of Patients Canada has a long half-life. Before the conference, I felt like a voice crying in the wilderness.After the conference, I thought “It is not a wilderness – it is a garden.”

Patients Canada was a total eye opener, so I’m a great enthusiast about the organization, and it makes me realize how my views and ideas can make a difference. Of course there are other organizations doing similar work, like the Canadian Patient Safety Institute (CPSI), but Patients Canada approaches healthcare from stem to stem. I believe that networking is foundational for patient engagement, which is why the notion of "patients included" at relevant healthcare conferences and events is so important.

My mission in life is patient advocacy. For me, it’s a new reason for living. I’m five years past diagnosis, and this is how I earn my remission.

Learn more about Dr. Robin McGee's work and new book on her website, www.thecancerolypmics.com.

ALL, Patient engagement, Stories about patient experiences, Spotlight  
April 2015

Open Meeting: Workshop on The Changing Relationship
Apr 27, 2015 3:52 PM

On April 23 we hosted a workshop to explore the impact of illness on the individual, in relationships and in family life. We discussed the complex emotions involved in illness and caregiving, such as loss of identity and changes in family structure, as well as the many positive aspects of caregiving. Our facilitators Arlene Consky and Renee Climans, social workers with Baycrest Hospital, guided the conversation with the goal of offering supportive interventions to attendees.

What changes as a result of illness?

Some attendees shared that they felt thrust into their role of caregiver, and that much of their frustration lies in not knowing what's ahead. In light of this we talked about the importance of reflecting on the ways our relationships change and will change. Equally important is how new roles affect our sense of self - a tapestry of identifications based in various traits and experiences. Holding onto your 'self' while being a family caregiver is crucial to mental and physical health.

When the caregiving role ends, which some attendees believe never really happens, it can be difficult to regain solid footing and return to the interests and responsibilities held prior to a loved one's illness.

What prevents us from identifying as family caregivers?

This can exist in the difference between who we are and who we want to be. Actually becoming a family caregiver is often the hardest part, as the transition can be mired in fear, resistance, and uncertainty about the future.

Careers as caregivers

Family caregivers contribute great economic value to Canada's health care system. That said, many attendees shared stories of how difficult and time consuming it was to find educational resources or financial assistance offered through government programs.

Our fragmented health care system makes it difficult for family caregivers to receive the support they need. From coordinating care to keeping records of prescription medicines, the burden of responsibility weighs heavily on caregivers as many are juggling caregiving responsibilities with family life and a full-time career.

Managing a patient's care can be even more difficult if that patient's behaviour turns aggressive due to acute changes to their personality.

"This is not a role reversal"

One attendee shared that he regularly had to clarify that he was not now playing the role of 'parent' to his ailing parent, as "not even illness can erase or overwrite the rich history of relationship." Being a family caregiver to a parent does not necessitate a role reversal, instead it offers the opportunity to re-contextualize your relationship to suit your current situation. Although it may feel this way, the role of 'caregiver' does not replace other roles that constitute our identity, such as son, daughter, sibling, friend, etc.

Caregiver stress

It's important that family caregivers separate today's battles from yesterday's decisions. Arlene and Renee shared the idea of the 'encumbered child', where children who assume caregiving responsibilities develop hostility and frustration toward their patient or other siblings. Watching a parent progress through illness is extremely difficult, and everyone in the family will handle it differently. By developing a support system grounded in understanding and compassion, siblings can reach common ground on what their parent needs and who is suitable for each responsibility.

The division of responsibility among siblings is rarely perfectly equal, and it's useful to maintain open lines of communication in order to renegotiate responsibilites as the patient progresses.

Lack of control

While we can't change our situation, we can change our perceptions, behaviours, and boundries. For example:

  • Shift your expectations of yourself and others to ones that are more reasonable and attainable
  • Recognize your own limits and set boundries
  • Care for yourself!

​Being mindful of your personal limits and needs can help you anticipate issues before they compound and become unmanageable.

Benefits of caregiving

Many attendees expressed how they feel useful in their role and that it's a source of pride. Caring is also a means to build more meaningful relationships. One attendee shared how her mother's progession with alzheimer's allowed her to feel a 'state of grace' by being present in every moment.

Family caregivers can find support in local support groups, in online forums, and in hearing the stories of others who are navigating a similar experience.

This unique, evidence-based workshop offers supportive interventions to patients and family caregivers. For more information about this workshop, contact Renee Climans at rclimans@baycrest.org.

ALL, Our Open Meetings  
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