The Role of Implementation Science in Familial Hypercholesterolemia

Dr. Cheeley:
According to the CDC, a genetic disorder known as familial hypercholesterolemia may increase the chances of developing coronary heart disease at a young age and can affect one in 250 patients.  So what role do implementation science strategies have in treating this disease? 

Welcome to Heart Matters on ReachMD.  I’m Dr. Mary Katherine Cheeley, and joining me today to discuss implementation science strategies for familial hypercholesterolemia is Dr. Laney Jones.  She’s an associate professor at Geisinger’s Department of Genomic Health. 

Dr. Jones, welcome to the program. 

Dr. Jones:
Hi, Dr. Mary Katherine Cheeley. 

Dr. Cheeley:
Let’s start with some background information on implementation science.  Can you give me an overview of what that is? 

Dr. Jones:
Yeah.  So implementation science is a methodology field that really focuses on how can we take what we know and implement it into care?  So can we move those evidence-based practices or guidelines and actually put them into clinical practice?  Because what we found is that sometimes we develop interventions that we find to work really well in clinical trials, but then when we go to actually implement them into clinical care, they’re not adopted as frequently and implemented as well as we would like into practice, so this is really the science about how do you talk to different clinicians or practitioners about up-taking those interventions and making it work in their clinical areas. 

Dr. Cheeley:
Are there different frameworks for implementation science based on the different clinical areas? 

Dr. Jones:
Yes.  So there are many different implementation frameworks, and how you select them and which one you select really depends on what the purpose of your project or what you want to implement is.  So there are a few online resources that you can go to to decide which type of framework you might want, but we have frameworks that span from program planning, which you’ll use to develop your program before you implement it, and then we have other ones that will help you evaluate your program, and those are called evaluation frameworks.  And then we have some that were just developed for the specific field of implementation science, and they really aim at measuring those implementation outcomes that we all find very important is that we didn’t just implement an intervention but we want to know why and how it worked, and what are those behind-the-scenes details that tell us how many people adopted this?  How acceptable?  And how feasible it was to our clinicians.  And then also how sustainable it might be in the future, but then they also allow us to look at these different levels of care, including the patient, the clinician, and the healthcare system, but also look outside to community and policy and different aspects that might affect why whatever you’re planning to implement does or does not get implemented.

Dr. Cheeley:
So you’ve been doing this for a little while.  How has implementation science worked in treating familial hypercholesterolemia?  Which is your area of expertise. 

Dr. Jones:
So I’ve been working really hard to bring implementation science to this field of FH research mainly because I think that there’s a huge gap in that a lot of individuals with FH never make it on evidence-based care.  We also have missed a lot of diagnoses of these individuals within our population.  And I think implementation science is really the key to understanding why these evidence-based practices that we have in this field actually haven’t been implemented into care.  So why are we not screening all kids nine to 11 for this condition?  Why are we not screening adults for high cholesterol values?  Or once we do, why are we not making that kind of FH diagnosis?  And then on the treatment side, even when people get diagnosed with FH, they don’t always continue to take their medication, which we know is important to prevent cardiovascular disease.

Dr. Cheeley:
For those of you just joining us, you’re listening to Heart Matters on ReachMD.  I’m Dr. Mary Katherine Cheeley, and I’m speaking with Dr. Laney Jones about implementation science. 

So, Dr. Jones, let’s jump back in.  What are some of the biggest challenges that you have when working within the frameworks of implementation science? 

Dr. Jones:
So I think one of the biggest challenges is that intervention or strategy might not work in one context but might work somewhere else.  So it’s really understanding—what are the baseline strategies that we could implement in the field of familial hypercholesterolemia?  What do we want to try out?  And then how can different systems adopt this and implement it in their practice? 

I also think we’re in a unique field within familial hypercholesterolemia where there’s a few researchers around the world that have also been really targeted on this, and it’s a very close-knit community where we know things in the U.S. might work here but might not work in other healthcare systems where they have different healthcare delivery systems, and also payers for that health care.  And some people are able to implement strategies on both the national or state level, whereas others are only able to implement it at their own individual healthcare system. 

Dr. Cheeley:
I think that’s a really great point.  FH is in every population, so it’s really interesting that you can do this at different levels.  It really is something that can be done at the home-grown level or larger.

So we have people all the time that want to get into process improvement or implementation science.  Where would they start? 

Dr. Jones:
Yeah.  So there are a bunch of different trainings out there if people want to go.  There’s some major academic areas that people can go.  Even the National Institutes of Health offer some training in implementation science.  But then you can also just go to PubMed or Google Scholar.  There’s a lot of premiere papers on what implementation science is and what this means for an epidemiologist or a pharmacist that people can look to to understand what the field really is, and then how they might use it within their own practice.  And there are people that study the field of implementation science and actually how to implement those methodologies into care, but you don’t have to be that researcher to do that.  You could also be the actual implementer who implements this within your practice and how you can make those practice changes. 

Dr. Cheeley:
So let’s look into the future, because I know that you see this getting much bigger and much better over time.  What’s on the horizon for using implementation science strategies in treating patients with FH? 

Dr. Jones:
So I think that there’s been a lot of work done, some by myself and some other colleagues on developing strategies that other people can then take and implement into their practice settings, and also working with different individuals around the world to make sure that we’re measuring not only the implementation strategies but also implementation outcomes, so not just did the intervention work but how did people feel about it?  What changes did they make to it?  How feasible was it to actually implement within their practice?  So I think we’re going to be seeing a lot more details on this in the near future, and hopefully, also some guidance on how these might be implemented in your healthcare setting. 

Dr. Cheeley:
We have these large guidelines, we have these big things that we know we should be doing for all of our patients, but how do you actually make that happen at your institution?  We all want the best thing for the patient.  We all want the patient to have a positive outcome, but we all have to be working towards it together.  It’s not something that we can silo and do individually because then we’re not all running with the same stride. 

This has been super eye-opening talking about implementation science to help care for our patients with hypercholesterolemia.  I want to thank my guest, Dr. Laney Jones, for sharing her insights with me today. 

Dr. Jones, it is always a pleasure to speak with you. 

Dr. Jones:
As with you. 

Dr. Cheeley:
For ReachMD, I’m Dr. Mary Katherine Cheeley.  To access this and other episodes in our series, visit ReachMD.com/HeartMatters where you can Be Part of the Knowledge.  Thanks for listening.