Patient engagement is a growing movement across Canada, the US, the UK, Europe and Australia.

It’s well underway in BC provincially through Patients as Partners – an initiative of the BC Ministry of Health – at our health authorities, and at our universities, where patients, the public and communities are “engaged” in many projects...

But even those most involved would agree that there is a lot to learn. So the focus of our talk today is how research could help us.

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These numbers relate to somehow to our health care system. Any guesses?

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1 – Canada’s place among 11 countries ranked for performance in the most recent Commonwealth Fund report, published in June. This is based on a number of indicators under the headings of quality care, access, efficiency, equity, and healthy lives. http://www.commonwealthfund.org/publications/fund-reports/2014/jun/mirror-mirror

2 – Average percentage of overall budget that Canadian provinces spend on health care. http://www.cihi.ca/CIHI-ext-portal/internet/en/document/spending+and+health+workforce/spending/release_29oct13_infogra1pg

3 – 50% of acute care hospital beds are occupied by seniors on any given day. http://www.bcmj.org/council-health-promotion/prevention-acute-care-seniors#1

4 - More than 200,000 patients get infections every year while receiving healthcare in Canada; more than 8,000 of these patients die as a result. http://www.phac-aspc.gc.ca/cphorsphc-respcacsp/2013/assets/pdf/2013-eng.pdf

5 - 45% of patients responded negative to the question “did you have enough to say about your treatment?” on a 2011/12 provincial survey of patient experiences with acute in-hospital patient care. On the plus side, when asked to give an overall ratingabout the inpatient care they received in British Columbia’s hospitals, 92% of all responding patients gave a positive response. http://www.health.gov.bc.ca/library/publications/year/2012/patient-experiences-acute-inpatient.pdf

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6 – 75 new trials are posted on MEDLINE – a system that indexes biomedicine and health articles – every day. Just to give you a sense of how much new evidence is produced…and how difficult it is to provide “evidence-based care…” http://www.nlm.nih.gov/pubs/factsheets/medline.html.

7 - Percentage of people in northern BC who live in an urban centre with more than 100,000 people. What does that say about how health care should be structured? Statistics Canada, Health Profile, December 2013.

We’re not suggesting patient engagement can or should address everything here. But all of these statistics could be seen as reasons for patient engagement.

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First, our own stories…

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A two-part story: beginning of life and end of life. Both among the most powerful experiences I have ever had, and both demonstrating the potential of patient engagement.

This is a piece I wrote for the Vancouver Sun in 1996 about the home birth of my daughter Sophie, applauding the government’s decision to fund midwifery services. We had not initially planned a home birth. We wanted to participate in a new program at BC Women’s Hospital that provided midwifery services for hospital births. But they had very limited capacity, and it was already full when we went to register.

A friend asked if we had considered having the baby at home. We hadn’t, and we were hesitant. But the more we looked into it, the more feasible it was. I’d had two good pregnancies and deliveries, so I was low risk low; we were near the hospital should anything went wrong; and midwives – who were not covered by BC medical plan at the time – had a sliding fee scale.

So we went for it – and it was the right decision. The birth happened on December 25th. Our older daughters were a bit put out to wake up on Christmas morning and find their mother in labour, so were quite happy to go over to their aunt’s house to open presents. And I stayed at home with my partner, my mum and my sister, who attended to my every need all day. At about 6pm, the midwife came over, and at 9, Sophie was born.

It was a wonderful experience, and I appreciated the chance to be so engaged in my own care through the pregnancy and birth. The fact that I heard about this option by accident encouraged me to become engaged at a program and system level as well.

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The second part of my story is about my dad, Norman Killam. Here he is with me and my brother, and here he is about 40 years later, very ill with multiple myeloma.

From the time he was diagnosed to the time of his death was only two months. We took him to hospital for what he thought was bad hip pain…and we immediately got lost in the system. In the run up to getting a diagnosis, there were the usual distressing events that should not have happened – someone had written melanoma instead of myeloma on his chart; an urgent bone scan requisition went missing between the cancer centre and the hospital; a well-meaning hospice volunteer offered him end of life counselling before we even knew he had cancer.

But then came the event we called Escape From Hospital. Like with Sophie’s birth, a friend asked if we had considered taking Dad home to die. Since no one had raised this as an option, we hadn’t considered it. But once we found out what support we could get, there was no going back.

He came home to his small cabin on a tranquil green acre in Langley. He spent time in the garden, ate his favorite meals, played with his dog. And we took care of him, supported by nurses, care aides and a palliative care doctor. They sat at our kitchen table, talking about this and that as they filled syringes. They taught us how to give my Dad needles. They helped us bathe him, and just generally kept us going.

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Eventually Dad’s pain became so great that we made the decision to put him on ‘terminal sedation.’ We slept beside his bed and nursed him around the clock. And one morning, between his 5am injection and the 6:30 alarm, he passed away.

The mixer is one of the most treasured items in my kitchen. Not because I bake a lot, but because it reminds me of that time with my dad. One of best things we did when he moved home was go through the huge amount of stuff he had accumulated, seeing what we could throw away to make his place more comfortable. It was therapeutic because it stimulated conversation and served as an important distraction from the fact that he was dying.

We weren’t successful in getting rid of much. Including the mixer, which I dug out of a box and held up with a quizzical look. Dad didn’t even have a full kitchen in his cabin.

His reaction was “Oh no, you can’t throw that away!” And then we both laughed, knowing –but not saying out loud – that he probably wasn’t going to get up to a make a cake any time soon. But he wanted to keep that mixer. And now I have it.

It was a devastating event that meant the loss of someone very dear to me, but again, I appreciated the opportunity to be so engaged in my father’s care. And because I feel I have a lot to say about palliative services, I have become engaged beyond the individual care level, at the program and system levels.

This story just happens to be about home birth and home death, and those are not for everyone. But the broader message is about the potential of patient engagement. At the individual level – because when provided with options and support, patients and families can become very engaged in their own care. But also at a system level, because patients and families have knowledge and experience that is valuable for the design of better programs and services.

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My perspectives are based on my experiences as a patient, family care giver, volunteer patient partner and researcher.

In 2003, I was diagnosed with bladder cancer. One of the unique features of bladder cancer is that it has a high propensity to recur frequently, and that was certainly true for me. By 2007, I had exhausted all of the standard chemo and immunotherapy treatments and was faced with having to have bladder removed. Rather than take that drastic step, I agreed to take part in a five year randomized controlled trial for a new drug. Unfortunately, the therapy didn’t work for me and the cancer returned yet again. So late in 2011, I had no choice but to go through with the cystectomy.

The surgery to remove my bladder was done by a uro-oncologist at Vancouver General Hospital on December 11. The expected length of stay was 7 to 10 days, and I had high hopes of being home for Christmas, but due to a long series of complications, I ended up being there for 30.

Even once I got home, recovery was slow and complications set in that landed me in hospital with sepsis, a life-threatening blood infection. My surgeon would have to open me up again to remove some scar tissue, but it took nine months to schedule the surgery, so for a time I lived with a stent with a tube coming out my back that required weekly dressing changes at my local community health centre.

I might also mention that for a period of about two years, I was the primary caregiver for my parents, both of whom died in 2011. My father passed away from congestive heart failure that was complicated by prostate cancer. The picture of my parents was taken in August, five months before he died and, as you can see, he looks quite frail. On the other hand, my mom looks awfully good for 82. Indeed, while she had been diagnosed with a relatively benign form of blood cancer a couple of years before, it hadn’t really affected her quality of life much. That is, until she had to deal with my father’s failing health and then with the loss of her partner of over 60 years. Only two months after his

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passing, my mom’s lymphoma became very aggressive, and she too died in October of the same year. Having watched my mom go downhill so rapidly, I am very sensitive to the issue of how illness affects caregivers.

Despite all of this, I’m very happy to say that since the surgery last year, I’ve being doing really well -finally!

Needless to say, I have had a lot of interactions with our health care system in many settings and, while I’m very grateful for the care I received, there were lots of instances where I felt less than positively about my experience. For example, there were times when I felt that no one saw me as a whole person, complete with feelings about what was happening to me. There were frustrations when the ball got dropped as I moved from one care setting to another and there were constant worries that care providers didn’t have all the information about me because of disjointed information systems. And there were lots of times when it felt like the systems in place were more for the convenience of the care providers than for the patients.

In 2010, my experiences as a patient and a caregiver prompted me to become a volunteer with Patient Voices Network - an initiative of the Ministry of Health under the banner of “Patients as Partners.” Its goal is to bring the perspective of patients to endeavors focused on improvement in the health care system. I joined Patient Voices Network because I wanted to give back to a system that had done so much for me, and because I felt strongly that patients have a unique perspective to bring to the table. It soon became apparent to me that one of the things we have to offer is our experience of the system as a whole and the gaps that are often the greatest impediments to effective care. Often, I’ve heard it said by our healthcare partners that they appreciate having patients at the table because it helps to keep the discussions real and to remind everyone why they’re there. And I love the fact that I can take what started out as a negative in my life and turn it into something positive!

My health history also includes a period of several years when I was plagued with urinary tract infections. I took so many antibiotics that eventually I developed a superbug. It took a month-long course of intravenous antibiotics – what they called “the big guns” - to bring the infection under control. The experience was, to say the least, frightening. Afterwards, I had lots of unanswered questions about the pros and cons of antibiotic use and whether I would have agreed to take so many if I had known then what I know now. In the spring of this year, connections I made within Island Health’s Research & Capacity Building department led me to become involved in a research collaborative with Dr. Kennard Tan, a microbiologist; Dr. Eric Shafonsky, a clinician/researcher; and Dr. Scott Hofer, a professor and researcher from the University of Victoria. Together, we’re pursuing a study that looks at women’s values and preferences concerning the use of antibiotics for treating uncomplicated urinary tract infections.

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Let’s start by breaking the term “patient engagement” down. First, who are the patients?

• Most notably, we’re talking about individuals with direct experience of a healthissue and their families and caregivers

We include family and informal caregivers because of the intimate nature of their relationship to the patient. There is no question that families and informal caregivers are deeply affected by the illness experience of their loved ones and that they are invaluable members of the care team. Because of this, they are legitimate surrogates for the patient voice. • Some people don’t like the term “patient” at all – especially those who experience a

chronic condition and who do their best not to let their condition dominate in their lives.In the mental health community, for example, patients refer to themselves as “Peoplewith Lived Experience”, “clients” or “service users”

• In some circumstances, it may include advocacy groups, because the queries receivedby a patient organization usually provide their representatives with a good overview ofthe issues affecting patients with a certain condition.

• Sometimes, the term “patient” includes healthy citizens because, invariably, we allbecome patients or caregivers and because we fund health care through our tax dollars.In that case, you may see the terms “public,” “citizen,” or “community” used.

Rule of thumb when setting up an engagement: draw from the community of those most directly affected. So, for example, if you’re looking at improving the discharge procedures in surgical wards, you would be best to invite people with direct experience of surgery and their family or caregivers. But if you’re looking to do something related to service delivery in a remote community in the north, you need to draw from the people who live in that community.

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Next, if you’re going to do a lot of study about this subject, you need to know that “participation” and “involvement” are synonyms for engagement although the word involvement is tricky because it carries a special connotation as you’ll see in a minute.

Thus, we have terms like patient and public involvement - PPI; or just public involvement (e.g. INVOLVE in the UK)

or public participation (as used by the IAP2).

And they effectively mean the same thing.

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Where does patient engagement fit with current thinking about healthcare improvement?

1. It begins with the triangle which represents the “triple aim”

• Improving the experience of care;

• Improving the health outcomes of both individuals and whole populations; and

• Reducing the per capita cost of health care

It is believed that improvements must be developed to simultaneously pursue these three dimensions, and this belief is key to the work being done within Patients as Partners here in British Columbia.

2. Patient-centred care is the next element. This concept is in the centre to represent the fact that patients are at the heart of why the health care system exists. There are various definitions of patient-centred care in the literature, but Colleen’s definition is: Decisions and actions that have at their heart the needs, values and preferences of patients, above all else.

This statement may seem rather self-serving; after all, there are many things and people to consider in a system as complex as health care. However, the evidence shows that a system that is focussed on the values and preferences of patients and that measures success in terms of patient experience is better able to meet the triple aim because, evidence has shown:

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• Patients recover faster, both physically and emotionally• Patients are more compliant • Fewer hospital admissions and fewer re-admissions• Fewer prescriptions• Less diagnostic testing• Fewer referrals(Patient-Centered Care: What it Means and How to Get There, by James Rickert -http://healthaffairs.org/blog/2012/01/24/patient-centered-care-what-it-means-and-how-to-get-there/)

The notion of patient-centred care is not controversial in the literature and, indeed, the BC Ministry of Health has set patient-centred care as the number 1 priority in its recent strategic plan.

3. It is believed and supported in the literature that when the system is patient centred, this will drive quality improvement. The subject of what constitutes quality is open for a lot of discussion, and certainly it encompasses the notion of safety. For now, here is a definition: “The care that the patient needs in the manner the patient desires at the time the patient desires.” [A 2020 Vision of Patient-Centered Primary Care by Karen Davis, PhD, Stephen C Schoenbaum, MD, and Anne-Marie Audet, MD]

4. Finally, in order for the system to be patient-centred, we must find out what that means to patients…that is, we must ask patients. Patient engagement is the foundation for patient-centred care. It is about giving patients, families, patient representatives and members of the community - a voice!

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Patient engagement can take many forms. This framework was derived from a number of resources:

• Patient and Family Engagement: A Framework for Understanding the Elements and Developing the Interventions and Policies, Kristin Carman et. al., Health Affairs, 32, no.2 (2013):223-231

• the IAP2 Spectrum of Participation (www.iap2.org)

• Patients as Partners – Integrated Primary and Community Care Patient and Public Engagement Framework, April 2011.

Down the first column are three levels at which patients can become engaged:

• The individual level – the realm of personal health and wellness

• The organizational level: (e.g. hospitals and clinics) – emphasis on programs and services

• The system level: “…the health system writ large” e.g. provincial and federal Ministries of Health - emphasis on policy and funding

The spectrum of engagement reflects how active and empowered an individual is.

• Consult – You’re asking people to help identify the problem and potential solutions (like hiring a consultant; decision makers can take it or leave it)

• Involve – You’re asking people to roll up their sleeves and work with you to

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operationalize the solutions

• Collaborate/Shared Leadership – You’re empowering people to decide on the solutions

Examples of engagements facilitated through Patients as Partners|Patient Voices Network

1. Self-Management

People with chronic health conditions and family members can participate in self-management programs offered in communities throughout BC at no cost. These are evidence-based programs which provide information, teach practical skills and give people the confidence to manage their health condition(s). (http://www.selfmanagementbc.ca/)

2. Victoria Hospice

The Victoria Hospice has set up a community reference group that meets about four times a year so that the management can get input on various issues of concern. For example, they wanted community input on a redesign of their website and, most recently participants provided feedback on a vision statement for the newly formed Research and Education department.

3. SPORThe Canadian Institutes of Health Research, Strategy for Patient Oriented Research - In British Columbia, there is an interim governing council comprised of senior leaders within government, health authorities, the major research institutions and two patient partners. The council is charged with overseeing the development of a support unit that will facilitate health research focused on what matters to patients.

4. Brief Action Planning: Northern Health

Brief Action Planning (BAP) is a highly structured self-management support technique that is used to facilitate goal setting and action planning to build self-efficacy in chronic illness management and disease prevention. As such, it properly falls within the individual level on our diagram. However, in January, Northern Health stated that they would like to provide training and certification for 100 clinical practitioners in the coming year. In order to achieve certification, providers need to conduct an interview with a standardized patient and coder to assess their effectiveness in delivering the material. Patient partners were asked to receive BAP Training and fill these roles as required; therefore, this engagement takes place at the level of the organization and at involve along the spectrum. (http://www.centrecmi.ca/learn/brief-action-planning/)

5. Northern Health

In March of 2014, as part of their semi-annual leadership forum, Northern Health invited three patient partners to attend the event and participate in a facilitated world-café session designed to collect information on how NH’s patient engagement process and policy will be shaped.

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Why is it important to have a common understanding of the concepts of levels of engagement and the spectrum of engagement and how they intersect?

It’s important to have a common understanding of language so that when we talk about patient engagement we all know what we mean. For example, the term “collaboratively” is often used to describe how we want we work together, but the term carries with it the connotation of shared leadership and power, which is not always appropriate. We need to be clear about the promises made to patient partners: are we promising that patients are equals at the table and that they have as much power and influence as the health care representative, or are we promising that the input received will be considered while the decisions are in the hands of the health care representative? Both are valid, but we need to be clear.

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Research on patient engagement is developing as a field in its own right, and has a lot to teach us.

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Patient and Family Engagement: A Framework for Understanding the Elements and Developing the Interventions and Policies, Kristin Carman et. al., Health Affairs, 32, no.2 (2013):223-231

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Brief overviews of three recent and quite different examples of research on patient engagement…

While we have already seen that patient engagement can encompass the individual, self-care level, these examples are about patient engagement at the levels of organizations and systems, where it seems the research is really needed.

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Key point from this paper: the importance of public credibility, legitimacy and power.

BOIVIN, A., LEHOUX, P., BURGERS, J. and GROL, R. (2014), What Are the Key Ingredients for Effective Public Involvement in Health Care Improvement and Policy Decisions? A Randomized Trial Process Evaluation. Milbank Quarterly, 92: 319–350. doi: 10.1111/1468-0009.12060

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Key point from this paper: patient engagement to improve care at the clinical, organizational and system levels appears less pressing than other system goals. Could this have something to do with professional identities and cultures? Three issues related to patient engagement that could arise for clinicians, managers and policy makers: 1) patients might want services that are not evidence based, and that might be counter to clinicians’ judgment of physicians. 2) allowing patients to drive care choices may drive costs up with fewer benefits. 3) giving patients control may mean that staff lose control over their work lives and are driven to exhaustion in the effort to meet patient demands.

http://www.cfhi-fcass.ca/sf-docs/default-source/reports/evidenceboost-rossbaker-peimprovedcare-e.pdf?sfvrsn=6

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Key point from this paper: if health care systems are to work well, they need to be patient-centred, and in order to be patient-centred, patients and families need to take part in discussions about programs, policies and service delivery. But the challenge is helping all stakeholders – patients and families, caregivers and administrators – to do that.

Kovacs Burns, K et al (2014). Practical resources to support patient and family engagement in healthcare decisions: a scoping review” BMC Health Services Research, 14: 175.

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- How does patient engagement lead to better outcomes? And is that always the goal of patient engagement?

- How do you recruit and support ‘ordinary’ people? Statistical representativeness is only one aspect of representation. We need to pay attention to recruitment and sampling strategies (eg., encouraging greater diversity, since the typical engaged patient at this time is white, middle-class, educated, female. But we also need to develop public credibility and legitimacy.

- Once recruited and involved, how do we reward patients for service – What incentives work? What are the consequences of financial rewards such as honoraria and fees?

- What does patient engagement look like in ‘real time’? We have some good theoretical models, and then we have patient engagement happening, but these don’t seem to be linked often enough. Ideally we have a theory of change before we start an activity, and we see if we were right.

- How can health research funding agencies like MSFHR help?

- And finally – are there still some elephants in the room? Patient engagement intuitively sounds great and seems important. But it is also potentially threatening, not to mention complex. What assumptions need to be called out, and what tensions need to be acknowledged and resolved?

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- There is a huge opportunity to learn more about patient engagement through research. What about a research agenda for patient engagement…a concerted and collective effort to answer questions of interest and importance to all of us?

- Is there an opportunity within Directions for Health Research? The provincial health research strategy has just been published and is available online.

- It was facilitated by the Michael Smith Foundation for Health Research, and there was broad consultation from many sectors. It has three directions and includes a number of actions under each, many of which relate to patient engagement.

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- And is there an opportunity through BC’s SUPPORT Unit? Colleen McGavin is a member of the interim governing council for the unit, and MSFHR facilitated the development of the business plan on behalf of our Ministry of Health.

- BC’s SUPPORT Unit is encompassed within the provincial health research strategy, which covers research from biomedical or ‘discovery’ research through population health research. The Strategy for Patient Oriented Research (SPOR) SUPPORT Units are co-funded by Canadian Institutes of Health Research and the provinces. BC’s business plan was submitted to CIHR in November 2014.

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