Solutions for Kids in Pain (SKIP): Bridging the Gap Between Pediatric Pain Research and Care
Editor’s note: April 18, 2019, saw the launch of Solutions for Kids in Pain (SKIP), a new knowledge mobilization network to help improve children’s pain care. SKIP’s mission is to improve children's pain management by mobilizing evidence-based solutions through coordination and collaboration. The effort is led by SKIP Scientific Director Dr. Christine Chambers, Dalhousie University and IWK Health Centre, Halifax, Canada, who is internationally known for her outreach and advocacy efforts in promoting evidence-based pediatric pain management. Funded by a grant from the Canadian federal government and co-led by Children’s Healthcare Canada, SKIP will be based at Dalhousie University and includes more than 100 Canadian and international partners. SKIP has four main hubs: the IWK Health Centre (Halifax), The Hospital for Sick Children/SickKids (Toronto), Stollery Children’s Hospital (Edmonton), and Children’s Healthcare Canada (Ottawa).
You can visit the SKIP website to learn more about this effort, including videos, downloadable materials, and news and announcements (see list at the end of this interview).
Here, Chambers, SKIP Knowledge User Director Doug Maynard, and two other key partners in the SKIP effort, Rachael Coakley and Stefan Friedrichsdorf, spoke with freelance writer Kayt Sukel to discuss what SKIP is, how it got started, and how it will help children living with painful medical conditions as well as knowledge users including parents, healthcare providers, and others. Below is an edited transcript of their conversations. (Disclosure: PRF is a SKIP partner with the goal of disseminating information about and findings from SKIP, but all of our coverage of this initiative is editorially independent, with all editorial decisions made solely by the PRF editors).
Dr. Christine Chambers, Dalhousie University and IWK Health Centre, Halifax, Canada―SKIP Scientific Director
What is SKIP?
Solutions for Kids in Pain, or SKIP, is a new knowledge mobilization network that brings together the knowledge producers—the researchers who are undertaking the latest scientific research concerning pediatric pain—and the knowledge users, who are the health professionals, decision-makers, policymakers, and parents and caregivers. Basically, a knowledge user is anyone who can benefit from the knowledge created by the producer side. The goal is to bring the knowledge producers and users together to make sure that evidence-based management techniques will actually get to the bedside and can make a difference for children living with pain.
To date, there hasn’t been as much attention devoted to making sure the results of research are actually put into practice. So that’s what this new network is focused on: not generating new knowledge but making sure existing scientific knowledge is actually used.
You are well known for your outreach and advocacy efforts in the field of pediatric pain. What inspired SKIP’s creation?
This grew from my experience as a Mayday Pain & Society Fellow. Back in 2012, I wanted to reach parents with research information about children’s pain. It started with a video on YouTube about needle pain management, and that video then led to a larger partnership grant that allowed us to develop the It Doesn’t Have to Hurt initiative with a Canadian parenting media site, Erica Ehm’s YummyMummyClub, with a reach of more than six million Canadian moms per month. That experience of partnering with different groups of people with complementary knowledge and expertise really laid the groundwork for this larger-scale knowledge mobilization network.
What are SKIP’s goals?
We want to target all the knowledge users in the system. My focus and interests to date have been reaching parents, but SKIP is much broader. We want to touch every person in the system—the children themselves, their parents, but also health professionals, administrators, policymakers, and other caregivers. We are trying to promote change from both the bottom up with patients and caregivers, but also from the top down, using this partnered approach. As researchers, we can bring solutions to the problem of pediatric pain, but we need the help of other people to make sure that research and those solutions are packaged in such a way that people can actually use them.
Importantly, SKIP takes a “Patients Included” approach, which means that patients and caregivers are actively engaged in all aspects of SKIP’s activities, management, and governance. Patients were involved in co-developing our proposal for SKIP, and patient partners are seen as full team members. So SKIP isn’t just for patients and caregivers; it is being created and implemented with patients.
How will SKIP achieve those goals?
By establishing partnerships with knowledge producers and users, we can learn how to engage people in the right ways for different groups. For example, if we want to reach parents, social media makes a lot of sense. But if you are trying to change pain management practices in a health center, Twitter probably won’t help you much. Therefore, we are developing partnerships with Health Standards Organization/Accreditation Canada. They are the group in Canada responsible for accreditation standards for hospitals. We will work with them on a new accreditation standard for hospitals focused on pediatric pain. That’s one example of how this kind of network can facilitate change.
There are other groups like ChildKind International, based in Boston [US], that provide certification for children’s hospitals that show a commitment to children’s pain management. Currently, only 10 hospitals in the world—two in Canada—have this certification. So via our key SKIP partner, Children’s Healthcare Canada, we’ll be working with 48 different health centers in Canada, including all the children’s hospitals, to find out how we can support them in achieving this important certification. It all comes down to providing resources and evidence, linking the right people through partnerships, and leveraging those partnerships to try to make real change.
Effective solutions and programs exist around the world, for example, The Comfort Ability program for chronic pain, led by Dr. Rachael Coakley, and the Children’s Comfort Promise program for procedural pain, led by Dr. Stefan Friedrichsdorf. Our goal is to work together with partners such as these to further promote uptake and adoption of these effective programs and solutions for kids in pain.
What does a SKIP partnership entail?
SKIP is open to anyone—families, health professionals, and researchers. Anyone can sign up to be a part of this and to be a part of helping kids who are living with pain. But we are also developing partnerships with different organizations, companies, and societies to help create specific activities for different partners.
While we are funded through a Canadian funding mechanism, we are not limiting our efforts to Canada. We are keen to engage whatever researchers, health professionals, or other international groups want to be a part of this, because we all bring unique information and unique talents to the table. We’ve been fortunate to secure a number of partnerships with different pain associations like The Australian Pain Society, the International Association for the Study of Pain’s Special Interest Group on Pain in Childhood, and a Nordic group of pediatric pain researchers called PEARL―Pain in Early Life. Our vision really is one of international change.
Given that vision, how will you push out those programs and other information?
Our partners are helping us build out an infrastructure that can get that information out in different languages and formats. For example, one of our partners, The Rounds, is running a Facebook platform for health professionals that offers webinars for anyone interested in learning more about pediatric pain and pediatric pain management. For parents, we are continuing our work with the YummyMummyClub in Canada and ParentsCanada magazine, and we are also making a commitment to having everything we create or co-create available to the public on the SKIP website.
What do you hope the impact of SKIP will be on the field?
Our goal is to improve the pain management of children in health institutions. We really feel like we can make a significant dent in that goal in our first four years, which is what we’ve secured funding for. We also think the international scale-up of SKIP has huge potential.
We are creating a platform that can help researchers better mobilize the results of their research. We want to know all about the pediatric pain science that is relevant to children and their families, and then work with our partners to get that information into the hands of health professionals, decision-makers, parents, and patients—ultimately, a new model for knowledge mobilization that will make it easier for pain researchers to ensure their research has real impact.
Doug Maynard, Children’s Healthcare Canada―SKIP Co-Director
How did you first get involved with SKIP?
I’m an associate director at an organization called Children’s Healthcare Canada. Our members are organizations that deliver healthcare services to children and include all of Canada’s children’s hospitals as well as community hospitals, rehab centers, home care provider agencies, and other organizations in the healthcare space. Part of our mandate is a knowledge mobilization program, providing a platform for academic centers to share research with the broader pediatric community in Canada. Dr. Chambers has been a big part of that, so when she approached us with the opportunity to participate in this new network and do something creative, exciting, and new, we were game. I’m the co-director of SKIP with her.
What are the challenges of getting information about pediatric pain management out there? Why can’t the usual channels, like journal articles and conferences, get the job done?
Researchers do a good job of mobilizing knowledge through those traditional channels, but the audience is typically other researchers. It’s a very good method to share information with the research community, but it’s not as good at getting that information to other stakeholders, like the program managers and clinicians who need to apply those methods in the hospital settings to improve outcomes for children and, of course, to the parents and children themselves. Researchers can do all the great things they want, but if they don’t reach those other key audiences, and if the healthcare community can’t or won’t implement the research, then the knowledge is wasted.
What will Children’s Healthcare Canada’s role be in SKIP?
Many of the new and exciting activities for us within SKIP have yet to be established. But we have access to the key audiences I was talking about that are often missed. We can reach the administrators, middle managers, senior executives, and other key stakeholders at hospitals and healthcare institutions. We also have the Canadian Family Advisory Network, which is largely made up of the different family advisory councils at various children’s hospitals. We bring this existing audience of end users to the table so they can work collaboratively with the research community and patient community to develop activities that can fill the gaps we see in pediatric pain management.
We are planning to focus our knowledge mobilization activities on the various levels within the healthcare system. It’s not enough to just connect with other researchers and some clinicians at conferences. As I mentioned, you also need to connect with administrators and middle managers and others to help transform research into the kinds of policy change and practice change you want to implement. We are also targeting patients and families so they are armed with the best knowledge to advocate for themselves and to clinicians who may or may not be aware of new, evidence-based practices. So we are really working with people at the system level, the program level, the clinical bedside level, and the family level so we can get the latest evidence-based practices to kids living with chronic pain.
What’s your ultimate goal for the platform?
The vision of this network is healthier Canadians through better pain management. We know that undertreated or unmanaged pain has long-term consequences, both through childhood and into adulthood. So if we can do a better job of managing pain, we can improve the health of Canadians overall.
Dr. Rachael Coakley, Harvard Medical School and Boston Children’s Hospital, US―SKIP Partner
How did you become involved with the SKIP initiative?
The world of pediatric pain, especially for those doing active research in pediatric pain, is pretty small. I’ve known Dr. Chambers for years and am allied with her in this idea of knowledge transfer. The work I do is very specific to the psychological component of pediatric pain management. When I started my clinical work in pain management at Boston Children’s Hospital, children and their parents often had to wait six months or more for psychological services. There was an incredible demand for cognitive-behavioral therapy, the gold standard of psychotherapy for chronic pain, but because of a lack of providers, and in many cases a lack of understanding of the value of this therapy for pain management, kids weren’t getting the help they needed. It was frustrating because if you can’t find a way to administer an effective treatment, there’s no way it can be effective.
We have 20 years of research on the efficacy of cognitive-behavioral therapy for chronic pain management but have consistently had trouble getting that information to families. I wanted to figure out what the barriers were and how to overcome them. So I’ve spent a lot of my research and clinical time over the past eight years developing a one-day comprehensive workshop for kids who are living with pain and for their parents called The Comfort Ability. This program helps people understand what cognitive-behavioral therapy can offer and empowers families by teaching some basic skills and therapy interventions they can do at home. The Comfort Ability is currently running at 16 children’s hospitals, including four Canadian sites. It’s already been a helpful resource for so many families. So when Dr. Chambers told me she was starting SKIP and invited me to join as a partner, I was immediately on board. We can use the SKIP network to reach more people and spread this knowledge on a much bigger scale. It’s a fantastic opportunity to start shifting the trajectory for kids who are stuck in chronic pain cycles.
How will that work?
SKIP will serve as a sort of broker to the healthcare system in Canada. There are 48 different sites, and SKIP can help to identify where particular sites may be falling short on the pain management front. Individual sites can then get recommendations from SKIP on how to address those gaps in care. So, for example, if a site doesn’t have enough resources to support kids who need cognitive-behavioral therapy for chronic pain, they can learn more about the Comfort Ability Program and why it might be a good asset for them. If it seems like a good fit, my team can take it from there and help on the implementation front.
What do you hope to ultimately accomplish as a SKIP partner?
I’ll be honest: I hope we can all learn from this innovative platform and maybe eventually create a SKIP initiative here in the US. SKIP is going to be able to look at the needs of different communities, at both a macro- and micro-level, and make the best use of our research evidence to better cover pain management gaps across Canada. It’s going to be a game changer.
Ultimately, the goal is to help more children. We already know that about 35 percent or more of kids with chronic pain will go on to be adults with chronic pain. And we know about the risks for co-occurring psychological issues like depression and anxiety, as well as increased risk of substance abuse. Mobilizing our knowledge and getting our best evidence-based practices into the hands of the kids and parents who need them is the goal. The sooner we are able to do this, the sooner we can help kids feel better, and reduce the risk and comorbidities that go along with chronic pain.
But in addition, I expect I will learn so much by connecting to the SKIP network. Joining with other researchers and clinical partners through SKIP will help unify all of our work in translational science and start to close the gaps in our research-to-practice pipeline.
Dr. Stefan Friedrichsdorf, Children’s Minnesota, Minneapolis, US―SKIP Partner
What inspired you to get involved with SKIP?
I like to collaborate with people who are good at what they do and who are even smarter than me. Dr. Chambers and I have been long-standing collaborators. Children’s Minnesota was the first children’s hospital in the world to implement something called the Children's Comfort Promise. We used all of the research available—research coming from Canada—about preventing needle pain to offer options to our patients. These include things like using numbing cream, sucrose, breastfeeding, and other evidence-based options to reduce pain for every single child, every single time. We created a program to promise that we will do everything possible to prevent and treat pain. To create a program like this takes a lot of collaboration.
The key thing for me is that it takes forever for research to reach the child’s bedside. It’s said, on average, that if you published a research article today, it would take 17 years for your findings to actually be used in a children’s hospital. That’s too long. We found a way to more quickly take research and make a program happen at the bedside without waiting so long. By working with really smart people like Dr. Chambers, I hope that we can see more evidence-based programs like this in the future.
What will your role be with SKIP?
I am chair of SKIP’s International Advisory Committee, and look forward to partnering with SKIP in other ways as well. Right now we’re working on knowledge translation, or how to best get the research information out to the children and their families. SKIP will work with both public and private sector partners not only to share scientific evidence but also influence healthcare policymakers and patients. To be pretty outspoken, but also to make sure that everything found on the SKIP network is practical and clinically the right thing to do—I feel like that’s what my job will be.
How can a platform like SKIP help implement more evidence-based pediatric pain management programs?
To start, pain treatment and prevention is just not taught enough. If you go into the healthcare field as a nurse or physician in the United States or other countries, you are not really taught how to treat and prevent pain. A veterinarian gets five to 10 times as much training in how to prevent pain in a hamster, yet we aren’t trained in how to best prevent and treat pain in children.
There is a need to do more. We were able to implement the Children’s Comfort Promise after doing a big survey. We are one of the largest children’s hospitals in America with an established pain and cancer care program. In the survey, we asked our nurses and doctors about how well we were doing with pain management. They thought they were doing pretty well; more than 96 percent said we were doing a very good job in treating and preventing pain. But when we asked the patients and their parents the same question, we got a very different answer. They said we stink at it. In fact, when you ask kids, even kids who had undergone cancer treatment or a bone marrow transplant, they will often say the worst thing was all the blood draws. It took that survey to help us change the culture, to get beyond our staff saying, “Oh, but it’s just a quick poke,” or “We just have to get it done fast.” With some of our patients receiving hundreds of those pokes over time, we had to make everyone understand how that collective experience with needles can change the brain and change how pain is perceived even many years later.
Changing culture is a lot of work. But when you have the knowledge that there is another way, and you have a coalition of people who are powerful enough to make change happen, you can do it. I think that will be my part in SKIP—to use our experiences here at Children’s Minnesota to help other organizations implement similar programs.
What do you hope to see SKIP accomplish in the long term?
My mission is to help eradicate pain and suffering. Right now, hundreds of thousands of children are needlessly suffering in Canada and in the United States. I’m happy to partner with anyone who has a reasonable chance of eradicating that pain and suffering. With SKIP, and the leadership of amazing people like Christine Chambers and her SKIP co-director Doug Maynard, we have the kind of knowledge and power to make that happen.
Kayt Sukel is a freelance writer based outside Houston, Texas.
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