Between the hospital spreadsheet and the individual’s experience, there lies a wealth of information that can help policy-makers, care providers, and researchers improve health. But how, exactly, do we explore it?
McGavin and hundreds of others in BC are stepping forward to share their personal stories with those leading health care design, delivery, and research. They are part of a larger movement, known in Canada as “patient engagement”, that sees patients not simply as participants in treatment or study but as valued partners in quality improvement.
Multiple studies support this approach, showing that patient involvement in health care leads to better outcomes, increased safety, lower costs, and higher levels of satisfaction for all. In British Columbia, patient-centred care is identified as the first priority in the Ministry of Health’s 2014 document Setting Priorities for the BC Health System.
The patient perspective is also gaining momentum in health research. In many fields, patients are making important contributions to study design, data collection, and communication. Initiatives like Canada’s national Strategy for Patient-Oriented Research (SPOR) are investing millions of dollars into building infrastructure that will not only support but encourage greater patient involvement.
Certainly there is broad agreement that patients have a valuable role to play; however, there is less clarity in this emerging field around how to make meaningful engagement happen, who should be involved, and even what the process is called.
In this issue of Spark, we attempt to demystify patient engagement by looking at some of the ways researchers, care providers, and even funding agencies are helping to put the patient voice to use for the benefit of all British Columbians.
Coming at the end of a year that had seen the removal of her bladder, a serious case of sepsis, and the insertion of a tube and urine bag in her back, this latest infection was devastating. McGavin’s confidence in the health care system had been shaken. She needed compassion from her care providers and reassurance that her health was in good hands.
“For (the hospital staff), it was sort of no big deal. There was none of that human understanding,” says the retired Camosun College business instructor. “‘Oh well, we have another readmission following discharge. Our bad.’
“It’s a number on a form that someone somewhere down the line will be made accountable for. But from the patient perspective, that was a very distressing experience and it did not help with my recovery or my trust level of the system by any means.”
Certainly McGavin’s experience does not represent the many care providers who work diligently and compassionately to ensure the welfare of their patients. It does, however, reveal a deeper truth about the challenges arising from the way health care systems are structured.
McGavin likens the patient experience to a conveyor belt travelling between providers narrowly focused on their own specialties. She believes patients can offer a unique, holistic view of health care that transcends the system’s silos and exposes its cracks.
"We have a gamut of experiences, and we interface with so many elements of the system,” she says. “When I think about the number of health care providers and the number of settings I saw in my journey with cancer over ten years, I began to understand that our health care system is very fragmented.”
Established as part of the BC Ministry of Health’s Patients as Partners initiative, the Patient Voices Network brings together patients, families, caregivers, and friends with health care providers for collaboration on specific projects related to health system change and improvement. Founded in 2010 and administered by ImpactBC for five years, the network is now led by the BC Patient Safety & Quality Council.
In 2010, seven years into her battle with cancer, McGavin stumbled upon a brochure advertising the network and was impressed to find the initiative was created and championed by the BC Ministry of Health.
“I thought, ‘Wow, this is amazing. Somebody at the top wants to know what I think about the system,’” she recalls.
McGavin applied to become an Activated Patient Partner. She was accepted, and over the past six years has fully embraced the role of patient representative. She has lent her voice to a wide range of health care and health research projects in addition to speaking publicly about her experiences. For her efforts, she was recently recognized with the Ronald G. Calhoun Science Ambassador Award by Partners in Research.
While the work has been personally fulfilling, McGavin is most proud of the change in attitudes she has observed.
She recalls speaking to a group of ward nurses from around BC to offer a patient perspective on “adverse care events” – a sterile euphemism for the many things that can go wrong in a hospital. As she explained the serious toll hospital-acquired infections had taken on her health and quality of life, McGavin felt she was connecting with the nurses on a human level that brought into focus the downstream impact of something as innocent as forgetting to wash one’s hands.
“The feedback was: ‘This has been incredibly inspiring and it’s going to shape the work we do today,’” she recalls the nurses saying. “‘We’re going to start to see our patients as people, not as numbers on some statistical report that we’re required to give to administration. It’s going to affect us when we do our work today.’”
McGavin’s story shows the momentum building behind the notion of patient engagement.
Ben Ridout, director of patient and public engagement for the BC Patient Safety & Quality Council, has seen significant growth in recent years. Since his organization assumed administration of the Patient Voices Network in December 2015, more than 40 new engagement opportunities have been submitted by health care leaders and providers. The network currently supports nearly 350 activated members, including McGavin.
Not only has the number of opportunities increased, says, Ridout, but also there are more diverse ways for patients to be involved. Engagement no longer means just providing information or offering limited consultation. Rather opportunities are available along the spectrum of engagement and many health care partners are focused on authentic engagement.
“There’s just more awareness of it now, there’s more demand from the health care partners,” Ridout says. “I think what the Patient Voices Network has accomplished over the past five years is really to increase that awareness and the involvement of the patient voice. What we’re excited about is now we’re at a tipping point where we can start to go even further.”
The UBC bipolar disorder researcher – a 2004 MSFHR Scholar – is doing her part to make up for lost time through CREST.BD, the world’s first network to apply a model known as “Community-Based Participatory Research” (CBPR) to the study of bipolar disorder. CBPR takes the basic concept of patient engagement and uses it to shape the research process around the perspectives and goals of community members.
Michalak’s awakening to the power of community-based research took place early in her career. While working in an “excellent but traditionally biomedical” university psychiatry department, she led a study involving face-to-face interviews.
“The more interviews I did, the more humble I got about my lack of knowledge within that area,” she recalls. “And by the time I’d completed that study, I realized that it didn’t make any sense for me to do it alone and that I couldn’t answer these complex questions effectively in isolation.”
For Michalak, the personal accounts were more than just subjective evidence – they were a road map pointing to a better way of doing research.
“It had to be multidisciplinary and it had to include that lived-experience piece.”
Michalak and other CBPR researchers take a broad view of “community” to include not only those with lived experience of a health condition, but also those providing social support: family members, caregivers, significant others, and health care providers. The term “patient” is largely avoided. Apart from any stigma the word carries, it is not inclusive of the many people who live with bipolar disorder but do not receive medical treatment.
In 2007, backed by an MSFHR Team Planning Award, she launched CREST.BD. As a core principle, CREST.BD strives to involve the bipolar disorder community at every stage of the research process. The network includes around 40 core members, many of whom live with bipolar disorder, although, Michalak notes, this experience is often just one of the hats they wear.
“We have people who are academics who live with bipolar disorder, clinicians who live with bipolar disorder, and then there are people who come in purely from a lived-experience perspective,” she says. “So even within that core group, there’s real diversity in the types of expertise they provide.”
Another group that has been vital to the network’s success is a growing cohort of “peer researchers” – individuals with bipolar disorder who play a key role in setting the research agenda.
“Erin will ask us for advice on what we think is best, and she really lets us guide where the initial research question comes from,” says Natasha Kolida, a CREST.BD peer researcher. “We discuss how we want to go about it, and we get a fair say.”
Once the questions are set, peer researchers are actively involved in data collection and analysis. Kolida is currently conducting one-on-one support sessions for a project studying how peer expertise can help coach people with bipolar disorder to live well. Drawing on her own experiences, she is able to connect with study participants on a peer level and guide them through the process.
The community voice is also represented whenever the network’s findings are presented at conferences or through other public channels.
“It’s rare for me to publish, present, or do media without somebody with bipolar disorder,” Michalak notes.
The insight gained from authentic community engagement has fuelled CREST.BD’s remarkable growth into one of the world’s leading bipolar disorder research programs. After building a local foundation, Michalak and her team received a CIHR Network Catalyst grant in 2010 that provided the boost they needed to go national.
Since then, the network has built partnerships with 20 community agencies and research networks, including the Mood Disorders Association of Ontario, Canada’s largest support agency for mood disorders. In recent years, CREST.BD has become an international movement, having established partnerships in Australia, the United Kingdom, the United States, Hong Kong, and China.
“We’re almost outgrowing ourselves,” says Michalak. “I have to say it is a lovely place to be now that word seems to have got out.”
Organizations as varied as PCORI (Patient-Centred Outcomes Research Institute) in the United States and the Vancouver Foundation locally have helped to catalyze participatory research through targeted funding programs and grants.
While this investment is essential, Michalak says, equally important is funding the work of building and sustaining community relationships outside of specific studies. Without dedicated support, the risk of “hit-and-run engagement” is high.
“You need to get a grant, so you set up a relationship with your community beforehand. But do you just drop them if you don’t get the money? Or the money runs out and then you don’t have any kind of longer term programmatic funding so you abandon all those valuable relationships you have established with the community?"
“The Michael Smith Foundation and other organizations have real capacity to fund those bits in between. Those don’t need to be large pockets of funding, but they’re critical to doing this work effectively and sustainably.”
MSFHR is currently developing several funding programs that provide exactly this type of support. One program slated to launch in 2016 will provide “convening and collaborating” awards to support team building at the start of the research process. Other awards focusing on dissemination and implementation science will support researchers to share their findings with community members and other research users. These programs are currently undergoing consultation with members of BC’s research community and will be rolled out over the next year.
“We can actually, in the work that we do, start to ask questions about an appropriate role for patients and the public and ask them, ‘How could you be involved in this?’” says Bev Holmes, MSFHR vice-president, research and impact.
One of the ways MSFHR is helping to bring the patient voice to the forefront is by facilitating the development of a provincial support unit for patient-oriented research. As part of CIHR’s national Strategy for Patient-Oriented Research (SPOR), the BC SUPPORT Unit will connect patients, health care providers, researchers and decision-makers to enable research that is focused on and informed by patients.
A 2015 Research Canada survey commissioned by MSFHR found that
British Columbians are interested in getting involved in health research, but only
are aware of specific opportunities.
To ensure patient issues are reflected appropriately, McGavin and another Patient Voices Network member, Gail Starr, have been embedded throughout the unit’s development, not as token participants, but as full partners. The two were selected to be part of the team that drafted the unit’s business plan, and both have served on the project’s interim governing council, working alongside research and health system leaders.
Currently in its start-up phase, the BC SUPPORT Unit is expected to act as a bridge for members of the public to connect with research. McGavin is leading the development of a patient engagement strategy for the unit that will help encourage British Columbians to have a say in health research.
The work is particularly timely in light of the public’s clearly demonstrated interest in health research. A 2015 Research Canada survey funded in part by MSFHR found that seven out of 10 British Columbians are interested in getting involved in health research, but only 16 percent are aware of specific opportunities.
As a publicly funded, independent convener, MSFHR can help British Columbians become more involved in research, Holmes says. The Foundation is currently planning an environmental scan to learn from other funding agencies that are involving the public in their work. The aim is to find opportunities to give members of the public, as taxpayers who support the Foundation indirectly, a voice in how health research funds are invested.
“It’s almost scary to think that only one type of stakeholder, like a research group or a funding agency, would make those sorts of decisions,” says Holmes. “It feels like there is a big voice missing. And that’s the voice of the public who are speaking as citizens of British Columbia.
These are big, complex problems with almost limitless abilities to address them in a number of different ways. So we need to ensure a wide range of input into the decisions we’re making.”