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In health research, the voices of people outside of the research team – the patients, caregivers, families – may be lost. In this episode, you’ll hear from leading researchers who are expanding the traditional definition of a research team and designing research programs focused on making an immediate impact. Although COVID-19 continues to be a major health care disrupter, it has also given researchers the space and permission needed to think outside of the box, expedite research projects, and arrive at new ideas and solutions that will serve us well beyond the pandemic. Listen to learn how conducting health research in real-time can help improve care and outcomes for patients, caregivers, and families.
Mission: Healthy People & Health Care Systems
Dr. Marsha Campbell-Yeo 0:06
As current practicing clinician, I’ve always been very focused on making sure that there’s been a component of my research program that is focused on making a difference now. Discovery is so important but making sure that that discovery and that research lands into the hands of clinicians who can actually make a difference for the patient and families they serve is a just an essential component.
Dr. Kenneth Rockwood 0:35
Clearly, with the pandemic. When we think about the nursing home population, they were very much at risk. And they’re at risk, largely in virtue of the reasons that put them in long term care in the first instance, which were two thirds and more people is because of dementia, and dementia that severe enough that they really aren’t able to comply with the normal triad of public health measures that can reduce the risk of transmission.
Lisa Carr 1:05
It’s been very hard for families. Very hard for the residents in the facility who have been unable to see, touch, feel, hug, loved ones. It was hard, but I think with this project if we can reduce the infection rates and be able to help to make sure that residents are able to access their loved ones and access outside and help them emotionally and physically.
Rhys Waters 1:31
Clinical trials are often executed in a deliberately artificial environment. Typically, it’s the scientist or physician who decides how everything will work, and what will be tested. The role and voices of people outside of the research team – the patients, caregivers, families – may be lost, or never there to begin with.
Today we will speak with leading researchers who are taking a different approach to clinical trials, expanding the traditional definition of a research team, and who have seen first-hand the power that comes from early collaboration with those on the front lines.
Welcome to Beyond Research, a podcast brought to you by Research Nova Scotia.
There is no question the COVID-19 pandemic created new obstacles for patients and caregivers as well as magnified existing concerns with our health care system. And although COVID-19 continues to be a major health care disrupter, it gave researchers the space and permission needed to think outside of the box, expedite research projects, and arrive at new ideas and solutions that will serve us well beyond this pandemic.
So what is the benefit of moving clinical trials outside the lab and conducting health research in real-time? Or even in a real world? Let’s find out.
Dr. Marsha Campbell-Yeo 2:52
With the onset of COVID-19, what we found was that almost two decades of research actually came to almost full stop. And that families were really relegated away from what we’ve been promoting as being partners in care, to being behind closed doors and not being allowed to come into the NICU. So as a practicing clinician, as well, as scientist, I wanted to very quickly find out, what was this impact going to have? Not only on outcomes of babies, their families, but even in the healthcare system.
Rhys Waters 3:29
This is Dr. Marsha Campbell-Yeo, a practicing neonatal nurse practitioner and clinical scientist at IWK Health and a professor with the Faculty of Health at Dalhousie University. The IWK is the leading health centre for women, children, youth, and families in Atlantic Canada.
Dr. Campbell-Yeo’s recent study is addressing the needs of families whose infants required neonatal intensive care during the COVID-19 pandemic. The study looked closely at the barriers and obstacles they faced as well as ways to implement virtual care options for these families during the pandemic.
Her research has further emphasized the importance of families being integrated in the care in neonatal intensive care units.
Dr. Marsha Campbell-Yeo 4:13
We know that blend between that high tech environment and having families involved have really improved outcomes for babies with respect to how they grow, how they develop, and also have demonstrated significant importance for parents mental health. We know that these families, these parents have about 30%, higher rates of depression and anxiety and poor mental health, because of having their baby in the neonatal intensive care unit.
Rhys Waters 4:45
Building on her past work examining maternal driven interventions to improve outcomes of medically at-risk newborns, Dr. Campbell-Yeo and her research team were able to connect directly with families to explore their stories and diverse experiences with NICU stays during the pandemic. The research team also engaged health care providers to hear first-hand what it was like for them living and working through the pandemic as well as leaders and administrators to establish a link to decision makers to ensure they could make immediate changes that would positively impact families.
So, the real question remains: how do you conduct real-time research in a neonatal intensive care unit, in the middle of a global pandemic? And more importantly, how do you effectively translate your results into practice?
Dr. Marsha Campbell-Yeo 5:31
It might be a surprise to a lot of people but for most research, it takes an average about 17 years for research findings to actually change practice. We knew that if we wanted to do real time research, to actually impact change, we needed to include all of the stakeholders at the table. so, we were very fortunate that we had a lot of established networks. But we also had the track record that when we reached out to ask people who hadn’t worked with us previously, they were so willing to come on board to make a difference. Some of the challenges is how in a pandemic, when people, and clinicians are so busy, how do you bring them to the table to even give them the information? so, we’re able to do this through really leveraging a lot of novel a, you know, using technology a lot more than we had before. We were able to give them information from families and had all the right people at the table to make the changes.
Rhys Waters 6:30
In the first wave of the pandemic, only one parent could be at the hospital, and they couldn’t leave. That isolated the parent that stayed – often the mom – as well as the parent who was looking after the rest of the family. Many Dads couldn’t see their babies. With the mental health impact that had, the recommendation is to never reintroduce such a restriction.
Dr. Marsha Campbell-Yeo 6:52
The leadership at the IWK. And through our team, they listened, they listened to families, and they made sure that didn’t happen. It made us have to do other things to make people safe. But at the end of the day, what we heard from families, they were so thankful to at least have two family members to be there with their baby.
Rhys Waters 7:12
It’s hard to imagine a major life event, like having a baby, taking place in the middle of a global pandemic, let alone having your newborn end up requiring neonatal intensive care. But consider if your family is located outside of the city, or even the province.
The IWK is the tertiary care facility for children in Atlantic Canada, meaning that babies from New Brunswick, PEI, and even Newfoundland and Labrador, will sometimes find themselves requiring care in the IWK’s neonatal intensive care unit in Halifax, often for extended periods of time.
In addition to gathering feedback from families regarding level of care and access to the health care unit, there were other hidden barriers that families were facing.
Dr. Marsha Campbell-Yeo 7:52
Even families with sufficient money and funding were hungry because nothing was open to get food. They couldn’t leave the hospital. Families who were transported across borders, their families couldn’t come couldn’t bring them clean clothes couldn’t bring them food. Mothers who had pain after delivery, were provided prescriptions, but had no access to leave the hospital to get those medications filled. And those are the kind of real things that we found out almost immediately, and we were able to change those practices and make a difference within months. And so I think that in itself, it was a huge success.
Rhys Waters 8:33
Dr. Campbell-Yeo’s past research has focused largely on interventions to improve outcomes for these newborns in the NICU specifically related to pain, stress, and even neurodevelopment.
Dr. Marsha Campbell-Yeo 8:44
I know I’ve been looking at ways to more actively engage families in care. We’ve demonstrated that families when they hold their babies during painful procedures, reduce pain by about 30%. We’ve actually changed practice at the IWK about how we’ve given care so this project really fit within my mandate, and you know, the mandate of many of my colleagues on ensuring that discovery is so important, but making sure that that discovery and that research lands into the hands of clinicians who can actually make a difference for the patient and families they serve, is just such a just an essential component.
Rhys Waters 9:26
The research team was able to co-design with parents and clinicians and implement clinical care pathways at the IWK NICU as standard practice to help ensure equitable and family focused care throughout the pandemic, regardless of location or family circumstance.
Dr. Marsha Campbell-Yeo 9:42
So we took all of the gaps, and we addressed them. And then we also moved everything that we had initially had in written format or thing, and we moved it all to online. We also we were able to leverage within these clinical care pathways secure, private ways for families to have better communication, both with a partner at the hospital, but also with the healthcare team. All of these things were instituted, again, because of having such strong linkages with our stakeholders, we created these virtual care pathways and actually instituted them into care. And we’ve been auditing and evaluating their impact.
Rhys Waters 10:25
But all these issues families in the NICU were facing were not unique to the IWK. In fact, these were barriers and limitations that were being felt by families across Canada.
Dr. Marsha Campbell-Yeo 10:36
We knew that we also wanted to make big changes, sort of to learn to make a difference, so that to help provide evidence, but we’re also very interested to hear what was happening across the country to do that.
Rhys Waters 10:48
Dr. Campbell-Yeo’s team was the first to ask questions to families as well as the first to collect national data regarding parental impact at health the centres across the country.
Dr. Marsha Campbell-Yeo 10:58
What was surprising was that it was such variation across the country, there were no standards, even within same cities with the same epidemiology of COVID, there was a huge variation in how families were being their access with their ability to use technology. And so this was also such a tremendous help in sort of bringing back and feeding back to help us make further decisions. And also to see some of the same problems happening elsewhere, we were able to enlighten and actually change practice in places across the country.
Rhys Waters 11:39
Marsha and her project team were able to incorporate their findings very early on during the pandemic to inform and improve care decisions for families of infants requiring neonatal intensive care at the IWK Health Centre.
Dr. Marsha Campbell-Yeo 11:52
The neonatal intensive care unit is an extremely high risk group. But it’s a fairly unique small population. When we did our social media, national survey, just ask families through social media and networks that we knew through parent networks. We had 233 families, in an extremely short period of time, provide us with pages and pages and pages of information that would have taken months, years to try to do in the traditional way. So while it won’t replace some of the things we do, because of course we’re clinical, we have to see and touch patients. Gaining that insight and using these different strategies is just a remarkable way to hear from families, not just locally. But again, you know, this was national, and we had representatives and families from every province.
Our approach was new to us. And yet it gathered information that just was well beyond so we will definitely incorporate many of the things we learned during this pandemic.
Rhys Waters 13:23
But NICU families were not the only group capturing the attention of health researchers during the pandemic.
Dr. Kenneth Rockwood is a professor of geriatric medicine at Dalhousie University, a staff physician at Nova Scotia Health, and the Senior Medical Director for the Frailty Network. Research Nova Scotia worked with Dr. Kenneth Rockwood and his team of researchers, Nova Scotia Health, two long term care facilities, the Windsor Elms and Northwood, and government stakeholders. In collaboration, this group shaped a research project to determine whether FAR UV-C lights installed in long-term care facilities would reduce influenza-like illnesses, respiratory infections, and COVID-19 infections among residents.
Stefan Leslie 14:05
The important part of this research is to understand how this kind of technology can work in the real world. From a logistics point of view, from a cost point of view, can it actually work in the facilities we have.
Rhys Water 14:19
That was Stefan Leslie, CEO of Research Nova Scotia. He explained to me that the project had ultimately been designed with broader implementation and mobilization in mind, engaging on those front lines to play an active role in shaping the research project. More than a standard randomized controlled trial, it is taking place in real time in two active long-term care facilities, both with unique characteristics, resident populations, and geographic locations.
So what is FAR UV-C light, and how could it help protect some of the most vulnerable members of our population right now?
Dr. Kenneth Rockwood 14:53
So the study we’re doing is a randomized controlled trial, double blinded, placebo control of a type of lamp that emits what’s called far UVC light. And the goal of the study is to reduce the transmission of COVID-19 and other respiratory illnesses that take quite a toll on older adults who are immunocompromised in virtue of their age, and illnesses and who live together.
Rhys Waters 15:23
Let’s just go through what all these things mean. Ken said “a randomized controlled trial, double blinded, placebo control of a type of lamp”. What is being tested it the UVC light. So one group is exposed to FAR UV-C light, and one isn’t. This is the control part. The lamps that look like the FAR UV-C lights – but are in fact are normal lights – are the placebo. It’s randomized because the groups selected for the FAR UV-C and the placebo are selected by chance. Finally, being double blinded means that not only do the residents not know if they are in the presence of FAR UV-C lights, but even the researchers who are monitoring the benefits and watching for ill effects don’t know.
Complete areas of the long-term care facilities – called neighbourhoods – were randomized.
Dr. Kenneth Rockwood 16:08
So it’s cluster randomized by neighborhood some of the neighborhoods who will get the active treatment and some will get something that looks exactly like the active treatment in terms of what the lamp emits but it’s battery made as placebo, it just emits a light of the color that we can see, not have the same characteristics.
Rhys Water 16:29
So what, exactly is being tested? What is UVC light? Dr. Ken Rockwood explains.
Dr. Kenneth Rockwood 16:35
UVC light is sunlight. A big part of the sunlight is UVC light. And there are wavelengths that determine whether we can detect it, where they can see it, what color it has, but importantly, whether it’s harmful to us. So everybody knows that if you’re out in the sun too long, you get a sunburn. You’re out in the sun too long, stay out in the sun, you can actually get the eyeball equivalent of sunburn, which is called photokeratitis. And so with old fashioned mercury vapor lamps of more than 100 years ago, that was the type of UVC light that was used and it had a wavelength somewhere around 254 nanometers, and that’s long enough to get into the skin or to get into the eyes and do damage there. In contrast, 222 nanometer wavelength lamps emit 222 nanometer wavelength UVC light is called FAR UV-C light. And the photobiology of that strongly suggests that it really is not enough to, it doesn’t have the characteristics that would allow skin or eyes, the cell layers there to be penetrated.
Rhys Waters 17:56
It’s incredible to imagine that this research project could improve outcomes right now, today, for residents living in long-term care facilities. But what I wanted to know, how would the research team measure success during the trial? What specifically are they looking for?
Dr. Kenneth Rockwood 18:10
We’re going to be very keen to know the number of people who test positive for potential COVID to illness and for comparable respiratory illness. And we’ve expanded the public health definition taking into account what we, what the medical community has learned about the way that illness manifests itself. In older adults, particularly frail older adults who live in long-term care. So for example, we know from a lot of really good data from the UK, that many people who are old and frail and infected with SARS-COV-2 virus, the manifestation of COVID-19 illness in them is not a runny nose or a sore throat or things we’ve come to rely on in younger people. But instead that they get confused, and they can they get confused in a specific pattern called delirium.
Rhys Waters 19:16
The research study will also be detecting signs of delirium, and its effect on mobility and function. So, this research goes beyond the incidence of COVID-19 and other respiratory illnesses. It will look at the broader impact these illnesses have on a vulnerable, frail population – and how FAR UV-C light may help improve care.
Dr. Kenneth Rockwood 19:35
So that’s been an interesting challenge. And when we think we’re going to face up to when we think that no matter what happens with the trial, we’ll get better at measuring this.
Rhys Waters 19:46
It is no secret that COVID-19 has taken its toll on Canada’s long-term care and retirement homes, resulting in a disproportionate number of outbreaks and deaths. From increased restrictions to complete lockdowns, residents, families, and staff have paid a heavy price. So when thinking about the logistics surrounding real-time research, let alone in long-term care facilities, it’s hard to imagine that it would be an easy process to get started, let alone in the middle of a pandemic.
Dr. Kenneth Rockwood 20:12
We reckon that with COVID, it was such an emotional experience, particularly at Northwood, where the mortality rate the first time it was high, people, they were highly motivated to take part, but they wanted to make sure it was safe. They didn’t want to trade, you know, trade one set of harms for the next. So we spent some time at ahead of time do a qualitative study of the residents there with whom we could speak and engage with staff and families.
Rhys Waters 20:38
The study team wanted to know what their perspective was: what questions did they have? Were they at all concerned?
Dr. Kenneth Rockwood 20:43
And really we had virtually no pushback about that, we had questions. But people were mostly wanting to know about safety. And, but any of the families who’ve been through the various waves of COVID, they were aware of the invidiousness and the potential harm of being confined to quarters. And the idea that people may not have to do that or do it for as long in this environment was something that was very persuasive from their standpoint. So the qualitative study allowed us to explore that with a level of confidence.
Rhys Waters 21:21
By engaging to understand questions and concerns, Ken and his team used that insight over the summer of 2021 to develop a range of new components for the research.
Dr. Kenneth Rockwood 21:32
So we did a feasibility study, we do reliability studies, we did validity studies of the new measures, the feasibility, applicability, the older ones that we had. So even though none of the lamps went on during the summer, a fair amount of work went on to put all of this in place, as well as to develop the protocol in a way that would meet the rigors of a controlled trial protocol.
Rhys Waters 21:57
In addition to studying their effectiveness, the research will also evaluate how residents, staff, families, and facilities respond to FAR UV-C lights and how costs compare to other available infection prevention options. This approach to a clinical trial covers experimentation through to clinical application within a single research project. Should this prove effective, it will be become possible to rapidly deploy a life-saving intervention in other long-term care facilities across the province and beyond.
And you can’t help but wonder, if this research was able to be successfully planned and implemented in the middle of a global pandemic, what lies ahead for real-time health research? And how will these learnings help shape clinical research practices and implementation for years to come?
Dr. Kenneth Rockwood 22:43
When I think about what the potential legacy of the trial is, that might go beyond the results of the trial itself, I think they’re considerable. I’d start by focusing on the ability to conduct high quality research in a nursing home, and to have it done in ways that don’t distort what the nursing home is doing. And ways that pull-out expertise and initiative and knowledge that’s there. For example, our protocol is vastly better because of one of the nurses who got involved in this at one of the facilities. And she’s just an intuitive researcher. She hadn’t done research during her career. But she’s asked all the right questions consistently and she’s adapted things in exactly the right way as questions have come up that we weren’t available to answer. She’s gone ahead and done it. And hasn’t waited for permission or put four or five options so that she figured out what the best thing was to do and do it. And she’s been uncannily correct in that, and so. So what we’ve been able to do is, is vastly better as a consequence.
Rhys Waters 23:56
Ken already has an idea about how this kind of work will be of interest to others.
Dr. Kenneth Rockwood 24:02
I can imagine being in a conference in a couple of years and something like this, standing up talking about how to get the research done, that’s going to ring true, right, that’s going to ring true to the constituency of people who might not have thought about doing it in this way before their institution. So I think the more that we bring to bear the spirit of inquiry, the desire to understand ways to improve and make your care better, that this could have a very important legacy in these parts. But because the issues that we’ve had to tackle here are issues anywhere, you know, how do you screen for declining cognition every day in long term care how to screen for decline in function every day, things like that, we’d be able to work that out and those hills will be very pleased to make available on a general basis.
Rhys Waters 24:57
We can all agree that taking the best possible care of families with infants requiring extended stays in NICUs and helping to alleviate undue stress is important. And investing in high quality and safe solutions for long-term care facilities is also a critical healthy aging strategy here at home and around the world.
Both Dr. Campbell-Yeo and Dr. Rockwood have seen the power of real-time research engaging with those on the front lines to play an active role in shaping research projects at the onset. We have heard that in many cases this kind of research can lead to stronger ideas and research results that can be quickly mobilized on a larger scale. If real-time research can be designed with broader implementation and mobilization in mind and help see improved patient outcomes sooner, how can we help create an environment post-pandemic to allow researchers to continue to push boundaries and strengthen healthcare delivery?
Dr. Marsha Campbell-Yeo 25:55
What it takes as a researcher to actually mount that response so quickly is having some sort of infrastructure already in place, having already established program of research and I would say probably even more importantly, having that network of strong relationships, not just with other researchers, but with key stakeholders, government clinicians, and of course, with my research, as such a paramount partner has been families. And so having that in place, you have to work really quickly bring together everything so that not only it’s not just the application, it’s to actually know that you can complete this work in a timely manner to make a difference.
Stefan Leslie 26:43
All of these different parts, working together collectively towards a shared objective will identify a positive way to undertake research in Nova Scotia.
Dr. Kenneth Rockwood 26:54
We have shown in Nova Scotia, in Atlantic Canada generally, that on a world stage, we can act, we can behave, we can innovate, we can design we can execute, in a way that’s about as good as anywhere.
Rhys Waters 27:08
Thank you for listening to Beyond Research brought to you by Research Nova Scotia.
We wanted to say a special thanks to Dr. Marsha Campbell-Yeo, Dr. Kenneth Rockwood, Stefan Leslie, and Lisa Carr.
To learn more about the research heard on this podcast visit researchns.ca/beyondresearch.
I’m Rhys Waters and I’ll see you next time.