Episode Transcript:

Frank Maddux:  End-stage kidney disease significantly impacts an individual's quality of life, morbidity and mortality. There's a growing body of evidence to support that patients with chronic conditions who take an active role in their care report better clinical outcomes. Nephrologist Dr. Kolitha Basnayake is Fresenius Medical Care's country medical director for the United Kingdom and Ireland. He's a champion for the transformation and delivery of home dialysis in the United Kingdom. Dr. Basnayake joins us today to discuss how quality improvement programs must address barriers to shared hemodialysis care for the individual. Welcome, Kolitha, and thanks for joining me.

Kolitha Basnayake:  Thank you.

Frank Maddux:  So give me your sense of the importance of patient centricity and patient-centered care. Kind of how do you look at this?

Kolitha Basnayake:  Patient-centered care or I should probably say person-centered care really emphasizes the importance of incorporating an individual's and their carers', their family's and their community's perspectives into the healthcare system in order to build trust and to improve their outcomes. Person-centered care, if you like, is a move away from more traditional disease-centered care or even patient-centered care, if you like, and more towards what's important to the individual, emphasizing that we work with individual patients in partnership. All this taken together really aims to increase an individual patient's health literacy, and I suppose health literacy being how a patient accesses, understands, processes or appraises and then uses information to make healthcare decisions. So the idea is that the more health-literate somebody is, the better their decision-making process is and hopefully better outcomes.

Frank Maddux:  When we think of our patients with end-stage kidney disease they have this kidney replacement therapy that they've chosen to undertake, and it seems critically important that the lens be not just on the successful treatment and procedure but actually the lens on this broader aspect of what helps them make their life better, and I would imagine that your concept of person-centered care involves things that are both medical and non-medical. Can you talk a little bit about some of the non-medical components of what you see as important for people under this rubric?

Kolitha Basnayake:  There are four areas really I would address. One is that any healthcare system, any healthcare process that a patient engages in or is put through should take into account, first and foremost, dignity and compassion and treat that patient with respect. Care, we need to recognize, especially in renal medicine, where we have patients under the care of multiple specialties and there are so many different facets to somebody's management, care has to be coordinated, and there has to be talk between the different specialists or different areas looking after a patient. And then care should be personalized, and that includes not just clinical things, which you alluded to earlier, but also social, emotional, psychological elements to it. And probably the most important bit of all is then when you take all that together the patient should or should be encouraged to take a more active role in their own care and take ownership, if you like, of what happens to them.

Frank Maddux:  One of the aspects of a patient being more active in their care is this concept of shared hemodialysis care. This shared care model is one I've been interested in learning more about that I think has developed a much better understanding of the components of kidney replacement therapy and what can patients do to support themselves through that. Can you describe shared care for me?

Kolitha Basnayake:  Shared hemodialysis care is a concept where a patient is able to take part or take over some of the components of their hemodialysis care. Now, for reasons of standardization and ease of understanding we in the UK have divided hemodialysis care into 14 components, all the way from very simple tasks such as weighing themselves, for example, handwashing to more intermediate tasks such as lining the machine, priming the machine, programming the machine and then the much more complex tasks such as self-cannulation, inserting needles into their own fistula, or giving themselves medications and then writing on a drug chart to say they've done it. And one of the important things about shared hemodialysis care and these components is that patients are able to do as much or as little as they want to suit them at a pace that suits them, and I guess one of the concepts we keep coming back to is the small-steps concept, where if you've got a patient who wants to take part in shared hemodialysis care you start small, and then they build up by taking on more and more tasks until they feel completely confident, and the idea is that eventually they'll be able to do all 14, and they'll be fully self-caring if they so wish.

Frank Maddux:  So this concept of self-care becomes a substantial part of certainly the home hemodialysis world that is gradually expanding and I think that we think offers a lot of opportunity to give people greater control over their own life and different options than in-center hemodialysis or even peritoneal dialysis, but the models that have developed-- and I think in the UK there are probably some of the most-developed models of this shared care model-- is there an approach specifically towards trying to bring somebody to where they understand the elements of safety, the elements of outcomes and the elements of what it is they can do to effectively qualify as a self-care patient?

Kolitha Basnayake:  Yeah, absolutely. So one of the key aspects of any shared hemodialysis care program is that you've got a structure to it. You have a patient being trained and the training documented, the patient being I suppose I hate to use the word "accredited" but given a certificate to say that they are competent in performing certain tasks. And when you build a structure into a program like that you're then able to review the quality indicators, if you like, of how well your program's doing, how well each individual patient is doing and how they're progressing through the different tasks, if they are, and that then enables us to determine whether they're safe to move from one task to another, whether they're safe to be self-caring or even indeed whether they're safe to be dialyzing at home. You asked about safety specifically, and I want to talk briefly about home dialysis. Historically home dialysis has been a well-established component of all hemodialysis programs, and we know that many patients who dialyze at home are fully self-caring, and those patients have comparable if not better clinical and psychosocial outcomes and experience compared to in-center patients, so those observations should give plenty of reassurance to clinicians and to patients that shared hemodialysis programs within centers are also safe.

Frank Maddux:  It's important that patients be activated to feel comfortable. In your population of patients what proportion do you think are actually interested in doing more and being more engaged in their care?

Kolitha Basnayake:  We participated in a quality improvement initiative in the UK called ShareHD, and one of our biggest dialysis units was the first one to take part actually. The program was remarkably well-received by patients. The unit already had a reasonably good track record of getting patients to become engaged and activated and more involved in their own care, if you like. We used that dialysis unit as a test bed, if you like, to develop our patient materials. We got patients involved in terms of helping develop both the training program, certificates, if you like, patient motivation materials, and similarly for staff, and then we rolled out the program across the entire NephroCare network in the UK. This all happened in 2019, and of course the pandemic hit, so it wasn't until early on in 2021 that we were able to do a more meaningful benchmarking exercise, and that showed that about 76% of all the patients across the NephroCare network are doing some form of shared hemodialysis care and in five of the units that we've got 10% or more of patients doing five or more tasks, which is a pretty significant number actually.

Frank Maddux:  That's actually much higher than I expected it to be, but it's really gratifying, because I actually have seen that when patients are involved in the actual procedure and they're not just passive to it they tend to become much more knowledgeable about the nuances that actually make a difference in there, and so it's quite interesting. As we've looked at home hemodialysis in the United States one of the topics that I brought up is that there is an environment that is somewhat limiting when we call it "home dialysis," because there's an assumption it's at your own home, but this concept that you could actually dialyze in small groups not in a healthcare facility but in sort of home dialysis but not at your own home begs the question that there are opportunities for patients to actually be overseen in a shared-care model by other individuals, whether they be other patients that are qualified at certain levels that you've described or whether it's other staff that might actually contribute to supporting a group of patients dialyzing, so it's a very interesting model both in the environment that it's come up in the UK and in Europe but also for the value-based care models in the US. I think it's one that has a fair amount of relevance, and I guess how hard was it for you to get started with changing the culture of patients to wanting to be more activated? Did you go to them and talk about it, or have they come to you, or how have you approached that?

Kolitha Basnayake:  Well, to start with, it's worth observing that there were a number of patients across most of the units in the UK that were doing some level of shared hemodialysis care. It's just that the number of tasks they were doing were relatively low. They were doing the more simple tasks, if you like, and there wasn't much structure to it, so what we did really was put a structure in place that helped patients and staff understand what needed to be done to get patients more engaged, more involved in their own care, and it's interesting, because when we first started this we went to patients, of course. We went to patients within the units and said "What do you want?" and we took onboard what they said in terms of trying to understand what interventions were required to make shared hemodialysis care more part of the day-to-day running of a unit, if you like. It's routine rather than exception. One of the things we looked at-- now, you mentioned different types of facilities. What we looked at was creating shared care areas within a dialysis unit where patients who are engaged in shared hemodialysis care would be placed, and we made sure that these areas were highly visible, and so that in itself drove forward the culture among patients. When they see other patients doing shared care you get other patients saying "Well, can I do that? Why can't I do that?" And some patients of course will then say "Well, I'm doing all this in a unit. Why can't I do it at home?"

Frank Maddux:  So that's very much like the model of the transitional care units that we've seen in the US, where you expose people to the environment where they can see things they could do, alternative modalities for care, and create some options for them that they ultimately say "Well, maybe I can take more control of this." You mentioned that there are 14 steps that are involved sort of in this that you just-- I don't know that we need to go through all 14, but it'd be interesting to kind of-- how do you categorize these steps, and what are some of the details?

Kolitha Basnayake:  So the 14 steps go from the, as I stated, very, very simple ones, from handwashing, getting your fistula ready, taking your own blood pressure, weighing yourself. Patient's then able to line the machine, so prepare the machine, set it up, prime the machine and then program the machine, and then the more complicated task of course, inserting your own needles and getting dialysis started. They can then proceed to troubleshooting on dialysis, ending their dialysis session, removing their needles, giving themselves medication, so it's a whole continuum. The important thing to remember, though, is there's no order in which those tasks can be undertaken. People can go straight to cannulation if they want to, and indeed one of the things I wanted to mention was when in the home hemodialysis programs that I've been involved in and in charge of in the past one of the first things we get patients to do is cannulation, because we recognize that that's the hardest and probably psychologically the most difficult one for them to overcome.

Frank Maddux:  I would imagine that if somebody does learn how to self-cannulate they actually probably become the best cannulator of their access because they know it. I'm guessing it also creates such a degree of confidence. That's a huge benefit to the rest of the shared care model, is if you can get over that hurdle you can get over any of the others.

Kolitha Basnayake:  Absolutely, and that's one of the features of feedback we get from those patients who have done the more difficult tasks. Their level of confidence they exhibit and the enthusiasm they have for I don't want to say shared care but more self-management, if you like, is phenomenal. It's really quite gratifying to see.

Frank Maddux:  We've talked about the benefits. What are some of the barriers to trying to move these programs along? Are there any practical things that we need to be more aware of?

Kolitha Basnayake:  If you look at the barriers with relationship to-- or rather with respect to patients, healthcare professionals and organizations, probably the most difficult barrier to overcome is the knowledge bit, because if people are not exposed to it from the start they're not aware of it and they don't have confidence in it, so getting people to understand what it is, what the benefits are to them, and that's I think in my view one of the biggest hurdles to overcome. From an organizational perspective there's always concern about resource allocation. That's one of the more difficult conversations we always have to have, but in practice when you look at it the actual resource allocation in terms of nursing time is not onerous at all, because once patients start to be trained and start to do their own tasks the level of supervision they need tends to decrease with time. And then there is a benefit there of course, because then it frees-up the nursing staff to undertake activities which they really want to be getting on with, like quality assurance, spending more time with patients and so on.

Frank Maddux:  I would imagine that most of the nurses I think would actually be attracted to this model, because they're finding ways that more help can be provided even if it's by the patient themselves.

Kolitha Basnayake:  Indeed, and I think from a nursing perspective there is a huge boost to their professional gratification that they get from being a dialysis nurse when they see a patient that they've treated that they've trained start to become independent and take on tasks of their own, plus then, as I said before, it allows the nurses to engage in tasks that they really want to get involved in, the quality assurance side of things.

Frank Maddux:  What is this thing called GIRFT that I've heard about, this Getting It Right First Time kind of thing? Describe that to me.

Kolitha Basnayake:  Get It Right First Time or GIRFT was a NHS England and NHS improvement initiative which was born from the recognition that no service is perfect. Every individual service, if you like, has examples of excellence alongside areas where improvement might be required, and so GIRFT aims to promote sharing an adoption of best practice while at the same time reducing variation, an unwarranted variation being the operative word really, because variation in itself is not necessarily a bad thing. The report was released in 2021, and it forms the basis of defining areas for targeting through renal service transformation programs in England, and those in turn aim to deliver high-impact interventions and high-impact changes along four domains. So the four domains are equity of access for patients, quality care and importantly with a focus on autonomy and well-being of individual patients, quality improvement being built into the heart of everything people do, and of course then delivering value to the healthcare service and the healthcare system. And there are five topics that they've identified: chronic kidney disease, dialysis, transplantation, acute kidney injury and systems working.

The implications you asked about. So the implications for the healthcare system are very wide-ranging, but I want to touch on two areas in particular. One is that patient experience and shared decision-making are to be central to the planning and delivery of any renal service, and that is one of the key recommendations within the report. And then there is also a clear recommendation about shared hemodialysis care, appreciating that shared hemodialysis care is a powerful driver for delivering home hemodialysis, for example, as an initiator for the home hemodialysis pathway, and that patient activation is associated with higher degrees of shared hemodialysis care. And so one of the ambitious recommendations is that there's a minimum prevalent rate of 20 % of patients on home therapies-- of dialysis patients on a home therapy, and that includes peritoneal dialysis, of course. And it also recommends that all units have adequate shared hemodialysis care facilities and that shared hemodialysis care becomes part of the day-to-day, if you like, of all in-center facilities, and they specifically mentioned both National Health Service units but also independent sector providers like Fresenius.

Frank Maddux: It seems to me one of the things we need to look at is how can you take what's been done in the UK and Ireland and begin to export that to other countries where we provide care. Our ability to sort of expand the conversation around shared care I think is going be quite important.

I'm just wondering if there are other countries that you either think already have made progress in this or that we should look at going to first because they are well-prepared for sort of the next step in adopting shared care?

Kolitha Basnayake:  There's two aspects to that answer. One is obviously we have a fairly well-established culture of it within the UK and Ireland. That's right. In terms of other countries that we know have adopted this shared hemodialysis care model, we know that the Canadian healthcare services have looked at it, and there are areas in Canada that are implementing it, and I think moving on from that, countries where there is a strong public health system along with a strong drive to deliver value in healthcare would be ones to go to first.

Frank Maddux:  It's an interesting topic that I think we within the medical office need to be sort of having more conversation about more broadly, because I think that begins to change the way that both within our company and within the field there's more conversation about this. So I certainly know that as we begin to look at our home strategies this is one opportunity to really change the dialog to something that isn't just about home hemo or peritoneal, but it's really around patients taking greater levels of control of their own treatment. You wrote an article in our annual medical report about this. Any sort of final thoughts or comments around where you think we should go as an organization with regard to this particular model?

Kolitha Basnayake:  The one piece of advice I always give is "start with the patients." Ask them what they want, what's important to them, and that will shape what form the healthcare strategy takes. Shared hemodialysis care is almost certainly going be part of every unit's culture, because most patients that we talk to want to be involved in their care. They want to take more control, and if they see that it's possible, we can show them that it's possible then it tends to grow organically.

Frank Maddux:  This concept of power and choice for patients I think is one of the things that is indicative of healthcare systems that have gotten past just providing access to basic care. They are now trying to optimize care for the patient. And I think for us trying to expand power and choice through the recognition that patients can do more for themselves-- there are these discrete choice surveys and tools to try to elucidate what it is that patients want. That may be one way to do it without sort of patients feeling like there's a right or a wrong answer but really try to understand how do they want to live their lives. Interesting. Any final comments around shared care that you'd like to make?

Kolitha Basnayake:  From a delivery perspective one of the important elements is to make sure that the quality improvements-- so the quality improvement aspects are built-in properly. There is a plan-to-check act to every intervention that you would do. Otherwise it won't carry on growing. And then data is the other important thing from an organizational perspective.  If you want to persuade the organization that this is a worthwhile intervention then data's really important to demonstrate that.

Frank Maddux:  I think for all of our home therapies our Connected Health offerings provide an opportunity to gather more information and data both about treatment time and non-treatment time actually around our patient population. This is going to be sort of an ongoing and I think important area to continue to have dialog with our company both on the service side, on the product side and in how we actually evolve the way we would like the field to move. I'm here today with Dr. Kolitha Basnayake, our country medical director at Fresenius Medical Care for the United Kingdom and Ireland, and we've been talking about shared care on this dialogues segment. Kolitha, thanks so much for joining me today.

Kolitha Basnayake:  Thank you, Frank.