A Conversation with Dr. Jude Kornelsen
This conversation has been lightly edited for clarity.
Ron: You’ve been working on rural health issues from both research and practice perspectives for many years. How are you currently engaged? What do you think are the major issues facing rural/remote BC at this point?
Jude: I’ve been community-focused, i.e., engaged in community-based and community-directed research from pretty much the start of my career and it comes from having the experience of living in a rural community and actually experiencing challenges myself and for my family in accessing health services. In the past, a lot of my work was focused on evidence-based system interventions for addressing some of the access issues faced by rural communities. So, I’ve done a lot of work from a system perspective on looking for example on “population health outcomes” based on distance to services, the local model of care, and evaluating the efficacy of local models. Increasingly, however, it’s become really clear to me that the most effective pathway forward is to nest rigorous evidence that we are collecting alongside community identified priorities and solutions to stabilize local health care. So, I believe that combining these two together creates a very compelling narrative and provides a lot of ground truth for what we’re doing. It’s not at all detached from the realities on the ground. In terms of the major issues, some of them are absolutely no different than what we’re seeing across the healthcare system in general. Lack of access to primary care providers, extended wait time for specialist visits, etc. But, we also know that there are unique challenges in rural settings, and these really stem from some of the specific characteristics of rural, namely isolation and low population density, which means there’s no specialist safety net for complex or emerging care. Some of the issues we’re contending with right now include the constriction of what’s offered locally. So, we see this most acutely with lack of access to maternity care and also emergency department coverage. Quite frankly, we just have to pick up a newspaper or listen to CBC to hear the pronouncements of constriction of services across rural communities or diversion of services. In fact, in our own community in Salt Spring, last weekend the emergency room was on diversion. This leads to an increased need for patient transport which is challenging as well when we’re on diversion. It’s easy to say ok, we’ll just move them out of the community. But then, how do we move them out of the community when we’re constrained with availability of assets? When an asset like an ambulance leaves the community, it means there’s no local 911 response in many cases depending on the size of the community or at least there’s reduced access to 911 coverage. We know that in rural communities, it’s incredibly difficult to maintain paramedics due to low volume. They’ve done some really well appreciated adjustments to the incentives for paramedics, but we still struggle with how to retain people when there’s not a lot of actual call. It’s very different than the paramedics in Vancouver who are working pretty much full shift, going from call to call. There are also challenges beyond transport. Access to “specialist care” in rural communities, the ones that don’t have a population size for focused specialist practice, means that when specialist care is needed, (and of course we know specialist care will be needed across the population), residents have to leave their community and this might be for a single appointment or might be a series of appointments or course of care such as in the case of cancer treatment. These are the kind of issues that we grapple with trying to maintain an appropriate level of service based on population need for small communities and then, efficiently and effectively getting people out and back when there’s the need for a higher level of care. I’m emphasizing the issue of getting the patients back to the communities because, again, all we have to do is read the news to hear the horror stories of people who are backed out of their community and then released from a regional referral centre with nothing. And often, if it is an emergency situation, you don’t even have your wallet. So, we need to be very mindful about repatriating rural community members back to their community. These are some of the issues that are challenging with rural health right now.
Ron: There are many issues that have been appropriately described as “systems issues”; however, in spite of the rhetoric, are we getting there in terms of a systems approach? Does this approach need to be reframed in some way, e.g., along the lines of current thinking around a ‘learning health system’?
Jude: We are always at risk of sliding into rhetoric, especially with key phrases and this is the case with many key phrases in health system planning. “Learning health system” is one of them, but so is “care closer to home”. Care closer to home is also one of the biggest issues. There are concerns like “what does care close to home mean”? and “where are the accountabilities for ensuring that?” But, let us think for a minute about what a learning health system is and I see it as a system that’s intentionally designed to continuously learn and improve on the basis of data and experience. Then, we have to think about how well the enablers are working right now. In my research experience, there are two issues: timely access to current data; and patient and community engagement. I think we have some challenges accessing administrative data in British Columbia in a timely way for sure and we need to recognize that due to the quickly changing nature of the health care environment. These delays make it very difficult to create feedback loops and to modify the way we’re delivering care in a timely way. Challenges around access to data are about the kind of data we are accessing and, for sure, health outcomes. Administrative data is crucial, but alongside the administrative data we need to be able to access individual patient experience data and community-level data. To understand these data, we need to engage with communities in a longitudinal, meaningful way and not just try to do some kind of focus groups. We do need to be really understanding of their history and context and work alongside, being in partnership with those who live in the communities. This takes time and resources, but it’s really the only way to create robust evidence for health system planning. Yet, are we doing this? I don’t think so. Do we have the potential to do it? Absolutely. So, this is an instance where I would choose to be more optimistic than pessimistic. We’ve got the mandate. We’ve got the mantra. Let’s take it up and let’s truly actualize what a learning health system is and change the system constraints right now for those continuous feedback loops to actually be meaningful and actually change practice. We’re not there yet but I’m hopeful!
Ron: As the saying goes, ‘when you’ve seen one rural community, you’ve seen one rural community.’ This, of course, is very true; yet, somehow, policies, referral patterns, regulations, etc. do not conform to this maxim. How do we address the inherent heterogeneity of rural/remote communities and reconcile with health services planning at the systems level?
Jude: I think this conundrum really prevents people from diving in, in a meaningful way. It’s daunting. Yes, there’s absolutely heterogeneity across rural communities within BC and elsewhere and even within individual health authorities, quite frankly. But, longitudinal engagement allows us to understand these differences well at the same time I believe. I respect the fact that there will be some kind of mid-range theories and by that, I mean those learnings that sit between the broad, comprehensive overarching theories. That reduces everything to commonalities. In essence, mid-range theories are on that kind of micro-variation by providing context and a nuanced understanding of differences, but they also allow us to pull out commonalities across, in this instance communities, and this is what we desperately need in rural research. Because, if we rely on the much-repeated contention that there is only variation in rural, we miss a significant opportunity for collective learning and in my estimation, I think that’s what’s been happening, and that’s too detrimental.
Ron: The big experiment on health care transformation in the 2000’s, shifting from community health councils to large health authorities hasn’t worked very well from the perspective of rural communities. What have you found in your work with rural communities? How are opportunities for change being championed and challenges being mitigated with communities?
Jude: I know most of the local leaders I work with would definitely want community health councils back, without a doubt. We have to remember that regionalization was actually based on a promise of increased local responsiveness based on the recognition that, for example, conditions in Oliver in the South Okanagan is entirely different than those in Terrace, which is true. From the perspective of specialist care, for example, these benefits allow maintaining a reasonably sized call group and providing health human resource redundancies, but entirely disadvantages smaller general services. For instance, we have seen local services that are increasingly constricted with the assumption that it is better to consolidate one location. I actually agree that this might be true for some specialist and subspecialist services where you do want them located where you have a high procedural volume, but it is not true for primary care. What we have seen, and the starkest example of how this hasn’t worked, is in the closure of 20 maternity care services across rural BC where they have been centralized due to a confluence of policy issues and practical issues and health human resource issues that have been brought by centralization. The promise, the bold promise of regionalization, has not borne out for small rural communities. It might do well for larger size centres, but definitely has disadvantages for rural communities and by the way, when they first started to talk about this (I think it was a 2002 policy document), they warned that in the process of regionalization, we must be mindful and pay attention to the impacts on small rural communities, because they anticipated that they would be at risk of losing services in trade-offs for further centralizing care. So, there was an awareness of it, but that awareness actually didn’t lead to sustaining the services or stabilizing those services or putting resources and investments into the smaller communities. Another comment we hear a lot is that, although the intent of regionalization was increased responsiveness to local communities and local conditions, the historical mechanisms that you alluded to that were in place for health system communication are gone, i.e., we used to have hospital boards and health councils that were populated by local community members. It was for the community to articulate the issues of concern to the community and there was a direct channel from these boards to healthcare decision-makers. From an administrative perspective, it was argued that regionalization would make these hospital boards and councils unnecessary because you would have direct representation for your region. So, they were disbanded. But, nothing was instituted to replace them even at regional level and even at local level. We hear this a lot from rural residents who report a lot of frustration over the lack of mechanisms for engagement and people who have been around long enough, often hearkening back to the good old days of “hospital boards”. The hospital boards were disbanded because there was a heavy administrative and bureaucratic burden with them, and they were quite expensive. However, we can do better and there’s lots of potential for digitising or having virtual platforms to fulfill the same function, but we haven’t gone down that path. I’m waiting to see how that plays out with the primary care networks (PCNs). We haven’t really seen it consolidated in individual PCN’s, of course, and it’s not consolidated across the province as a provincial mandate which is what I firmly believe we have to have, and we don’t.
On that point, we now have a Parliamentary Secretary for Rural Health – Jennifer Rice as of January of this year. There’s a great role she could play in terms of promoting this.
Ron: Currently, you’re working closely with the BC Rural Health Network (BCRHN) in order to advance rural health. Could you please describe the role of the BCRHN and how the parliament secretary might fit in?
Jude: The BCRHN is a wonderful, truly grassroots organization that represents healthcare issues common to communities across rural BC from a community perspective. It all came from individual communities that banded together under the auspices of the BCHRN and they’re a very effective advocacy group. The quality that I really appreciate about the network is their community driven articulation of priorities. For example, they grapple with the concerns that they hear directly from the membership which is very different than responding to priorities established by the health authority or professional organizations (which happens in other mechanisms of engagement, for example, through the Patient Voices Network). The Patient Voices Network is also important, but it’s a different paradigm where the topic is already identified and articulated, and you get patient perspective. This turns 180 degrees and allows the communities to actually articulate what the issues are. So, I think that it’s essential and they also move from the idea of a patient partner paradigm which is rooted in the assumption of perspective, that is, individual patient partners bring their own experience to the table which is really valuable when it’s embedded in aggregate data. If you’re relying solely on perspectives, we are at risk of skewing our understanding of early issues based on the lens of particular individuals and we know the difficulty of including those that we don’t usually hear in these roles, namely, people from the marginalized communities or those representing marginalized communities. If we don’t have a very strategic and dedicated prioritized agenda for including a diversity of people in these roles, we are at risk and we do normatively value the status quo. That can be dissipated if we approach not the individual, but communities, which is what the BCRHN does. I actually think the role of the BCHRN is absolutely crucial. In my work in the past 20 years across rural BC, there’s never been an organization that actually fills the significant gap of conveying rural community voices to policy and decision-makers and advocating from an evidence-based perspective. In terms of our parliamentary secretary for rural health, I was delighted to hear the position announced. I was delighted to hear Jennifer Rice appointed to it and we’ll have to wait and see. I think she is fighting a bit of an uphill battle to represent marginalized views from rural communities when you know there’s a lot of focus historically and contemporarily on urban issues. Now that we’ve got this role, and I’m absolutely delighted, it’s kind of “let’s wait and see”. Hope for the best!
Ron: The BCRHN, in addition to advocacy, has also recently created three position papers to help bring about positive change for all rural residents. These include:
- Optimizing community participation in healthcare planning
- Travel subsidies for rural residents who need to travel for healthcare
- Relocation support for rural birthers
Could you briefly describe what each of these position papers is about and what they are hoping to accomplish?
Optimizing community participation in healthcare planning:
Jude: As BCHRN is a solutions-based organization, they try to come to the table with ways of addressing problems from the logic of community experience which many people believe is missing from a top-down approach. They have issued a series of priority issue papers. Their ground truth is coming from a living experience of people trying to access healthcare. So, I find them incredibly valuable. One of the papers is on “optimizing community participation in healthcare planning”. This position is based on the growing evidence on the value of community and regionally-based voices, and we hear that from our membership. What we’ve done, through the position paper, is advocated for a two-step process to work towards optimizing rural residents’ voices. The first step is based on best available international evidence and pan provincial community consultation that we did. We advocated for the BC government work with the BCRHN to create an implementation plan tailored to British Columbia’s geography and rural health services reality. The second step is that we recognize that we implore decision-makers to recognize that innovation is driven from within rural communities and occurs at a grassroots level across rural BC. So, local knowledge, local cultures, indigenous priority, and cultural sensitivities need to be the foundation of health planning and healthcare practice and this foundation will then create the models that will inform an overall BC relevant approach to residents’ voices in their health and health care planning. These were the issues we’ve tried to articulate in the first position paper.
Travel subsidies for rural residents who need to travel for healthcare:
Jude: The BC Rural Health Network was advocating on behalf of rural residents for increased government funding for those who require travels from their community to access healthcare. We were specifically advocating for full coverage for travel and accommodation expenses, for escort coverage, and that the coverage be available in advance of the required treatment or at the point of treatment to ensure treatment is sought. I have to say I’m always surprised by the number of people who live outside of rural (in larger urban centres) who aren’t aware that if you’re a rural resident living in Golden for example and you have a specialist deployment in Cranbrook, you are solely responsible for getting yourself to Cranbrook from Golden for that specialist appointment. Likewise, if you need procedural care either at a regional referral hospital or in a tertiary centre down in the lower mainland, you are responsible for getting yourself to that care unless your status is indigenous. There is currently no extra funding to help with that. That is a huge expense for a lot of people, and it actually is care limiting in the sense that people will opt to not go for care until it’s a dire emergency which, of course, creates more health system utilization. If we would have dealt with it upstream, it wouldn’t be such a problem later on. So, that lack of facilitation of getting to and from your small rural community disadvantages the vulnerable populations the most (The ones who don’t have available income even if it’s a refundable trip). But, to pay upfront? I’ve talked to many people who say they can’t afford the bus fare or the hotel to go to the appointment, and their appointment is at 8:30 in the morning and the communities are three hours away. All of these issues that we don’t really think about from an urban perspective become increasingly important as we are trying to deal with what I call the tyranny of our rural geography. We have communities that are great distances away from larger centres. It’s difficult. We’re really advocating for full coverage. Interestingly and almost kind of ironically, I was very interested in the announcement by the BC Minister of Health with regards to subsidized funding for people who will now be traveling to Bellingham to access health services for cancer treatment. Because, rightly so, we need to get people to treatment as soon as we possibly can. I think it’s totally appropriate that there are travel accommodation and escort even paid for in advance. I think that’s entirely appropriate. However, what’s not appropriate is that the people who need to make the same kind of travel within BC do not have any of those supports. If you live in Smithers and have to go to the Lower Mainland for cancer care, it’s on you and that is exceedingly expensive. I am really hoping that the announcement of subsidized funding to go out of country (which we can debate the merits or the lack of merits of this later on) that those same supports are available to people who are staying in British Columbia. It’s really a great example of inequity.
Relocation support for rural birthers:
Relocation support for rural birthers focuses our first position paper on travel support across rural BC. We know that the best care for birthers is care as close to home as possible in a safe protected environment, but there are instances in the rural population that definitely cannot safely support a maternity service. There are not enough births per year, for example, due to low volume of deliveries. There has also been increasing instances of rural maternity services like Salt Spring going on diversion due to staffing and transport issues. In these cases, birthing families are required to leave their communities for the intended place of delivery before the onset of labour. This may be two to three weeks prior to the due date and follow-up care is required after birth. They need to spend maybe a month in a referral community or longer if they run into complications. So, although travel and accommodation are covered for status First Nations families, expenses are not covered for others, leading to substantial out of pocket costs. This creates an undue burden on rural families and effectively limits access to care. We’ve also seen the rise in unassisted home births. People do not do unassisted home births for political reasons or philosophical reasons (like, say, in the heart of Vancouver), but there are people who do because they feel they don’t have other choices. So, they need to stay and birth in their community. We are advocating for the Ministry of Health to partner with communities to determine the appropriate system supports needed so families can access intrapartum care. We specifically advocate for financial and social support and accommodation for travel in instances when care isn’t available locally; and this should include full coverage for travel, accommodation and escort coverage, and that coverage being available in advance of relocation. When we think about Canada, we don’t think about the cost of healthcare. However, we think about that in the United States a lot: “How much does it cost to have a baby”? Well, I’ve got to tell you that rural families weigh the costs of having a baby when they have to leave their community and, for some, it’s too much.
Ron: I know you’ve explored ArcGIS for real-time input. Is that something that you could see being used through community participation so that there’s a lot more ‘real-timeness’ to the planning as opposed to what we have accomplished in the past?
Jude: Absolutely! We have to realize that research timelines are not decision-making timelines and conversely decision-making timelines are not research timelines. I remember one of the cathartic moments for me was when a colleague in the Ministry called me up and said, “we really want to understand the implications of community paramedics”. “Could you take a look and do some data gathering on this for small rural communities?” and I went saying “ok, I’ll apply for a grant. The grant deadline is in four months, and it’s adjudicated in a year. It will take me about a year to get the grant and I can get you something back in three years”. Well, that just doesn’t work. We absolutely need more rapid access to rigorous data that does not mean cutting corners and taking shortcuts. It just means focused rapid access to answering some of these questions. So, that is one part. The second part is that there’s a fair amount of cynicism in rural communities about return of data. When they participate, whether a resident or a community leader or a healthcare provider, the issue is that how they see it returned in the form of policy change. Of course, as health services researchers, we’re not responsible for the policy change, we are responsible for working with the policy-makers to understand and implement the evidence, but we can never ultimately guarantee there’s going to be policy change. So, the slowness of this process has really created a lot of cynicism amongst rural communities. I believe we need a lot more transparency. When people are putting data into a project or answering a question, they need at the very minimum to be able to see first of all what other people are saying in a timely way and understand what the accountabilities to using the data are. It’s not that every decision will be based on what the community says. But, we do want some assurances that what the community says is weighed alongside all the other evidence cycles into health planning. Both of those issues are really important and can be facilitated by, as you say, for example, a virtual platform where we can do things much quicker, much more efficiently, and with greater transparency and, yes, we are looking at using ArcGIS Survey123 to do that.
Ron: You’ve accomplished and published a lot of research around rural health and are keenly aware of the challenges of getting findings into policy and practice. Who needs to be made aware of rural health research and held accountable for implementation? Could you please discuss these challenges and how they might be best mitigated?
Jude: Accountability has to happen at a local municipal level. It has to happen at a regional level with the health authority who’s delivering the services, and it has to happen at a provincial level for the policy in terms of the policy creation to be rurally responsible to take in the data and evidence from communities. However, other partners need to be accountable as well (e.g., the professional associations). The challenge is “how do we hold them accountable”? To do that, we have to understand and address the gap between, for example, the rural community voice, the community-oriented outputs of conversation and advocacy into policy and decision-making, and its uptake into planning at provincial and regional levels. I think some of the issues we need to be thinking of is our starting with the big question which is “what culture change needs to occur to increase the receptivity of the outputs of community-oriented voice into policy and decision- making”? Because culture is a huge part of it. Are we just nominally valuing the notion of evidence-based policy, or do we actually want to dig into the evidence base and have it inform our policy? By the way, when I talk about evidence, I have an expansive definition of evidence. Of course, it refers to rigorous, peer-reviewed, published works, but my definition of evidence also includes the individual lived experience, the collective of the individual experience, consolidated in communities as well as policy directives that are kind of inferring a direction one way or another. Taken together, that is all part of evidence and that requires culture change at all levels to be embracing as opposed to be resentful or afraid of evidence. The other thing that we have to be thinking about is “what’s the role of community voice in policy formation at a regional level like a regional health authority level and provincial level from the perspective of those creating policy”? Do they value the consolidated community voice for influencing how their policy is going to roll out? And that leads to a very tricky question which is “how community input weighs alongside other policy influences such as the available resources at hand, the political values, the electoral cycle, cultural beliefs and all of the other things that go into making policy”? How much weight do we give to the role of community voice, and I don’t think we’ve really worked that out and, of course, there’s not going to be a standard answer across the board. Those questions are not in common parlance. The other thing we need to be thinking about to bridge this gap is “what level of priority are we giving to diversity of voices and how is diversity included and facilitated”, like hearing the voices that are not usually heard in healthcare planning? It takes a lot of extra effort in part because of the cynicism involved with these subgroups where they have not had the experience of being listened to. They don’t believe they will be listened to. We need to ask them how they want to engage and then take that engagement back to the policy and decision-making. I guess the last thing I would think about is “what are the gaps in resources that are needed to actualize the inclusion of community level evidence or community voice in healthcare transformation”? Because if we are not resourcing the people who are making the decisions appropriately, it’s going to be very difficult. That’s not more of how do we do it. It is how do we set the infrastructure up to allow this to be successful, but I’m just going back to the very first thing I said. Because I believe the absolute most important thing is “culture change”.
Ron: You mentioned the right direction for the research community and that would include, I presume, the funding institutions because you mentioned earlier there’s a big lag time between applying and actually getting funding and, then, the results in terms of years. Are you aware of any institutions that actually have sped up these cycles so that we can have more ‘real-time’ research and findings put into practice?
Jude: It’s not like they can’t do it. We saw an incredibly rapid turn-around when we needed data about COVID-19 in the pandemic. CIHR had about a three to four months turn-around from an application to release of funds since we needed the data expediently. So, it’s not like we can’t do it. It’s that we don’t. At a local level, I want to shout out the amazing Social Planning and Research Council (SPARC BC). They did an incredible turn-around from an application to us receiving funds. This past cycle was about three months, or maybe even less, to start looking at issues of quite urgent importance around getting evidence into policy and planning, and they deemed that as a provincial priority. It was a very quick turn-around. It’s not like we can’t. It’s more about that we don’t and maybe that’s because we don’t recognize the value of rapid access to data and rapid return on that access to data.
Ron: In conclusion, is there anything else you would like to highlight around rural health issues?
Jude: I’m just going to look back to what you said: “Are we moving in the right direction?” Of course, more can be done. There are system-level initiatives right now that seem to be moving in the right direction, but I would frame this more around something I’m interested in which is “whether or not the research community is moving in the right direction in taking up opportunities to understand the innovation that’s happening in rural settings”. For example, whether or not really inspired innovative models of care such as “family physicians with enhanced surgical skills offering procedural care in small volume communities” (which I think is absolutely brilliant) might be of value in larger centres. The advantage of rural research for me has been that there’s a very clear population denominator. So, for example if you’re looking at models of care in Salt Spring Island, you pretty much know where your population is. Because we are on an island. You’re going to be receiving care from local communities. Some people go off the island, but most people receive care from local communities. You can really accurately measure the health outcomes and the impact on local population. That’s actually a huge advantage, but you know whatever we do it’s really crucial that we engage with rural communities to make sure that we’re applying a local lens to any analysis. All I would say is that there’s a great opportunity for us to take up the collaborative community-engaged rural research in a meaningful way.