Excellent and insightful review of the IM-HOME article.
I'm the grateful recipient of a preemptive kidney txp from a living donor. What struck me in reading your piece is that the same barriers to home dialysis (save for space at home) are barriers to living donation transplant: fear, lack of education, concern with resources, payment systems, provider perspectives in evaluation, etc. I teach a course at my transplant center on "How to Find a Living Donor" and have encounter these same concerns in almost all patients - in part because the entire transplant structure is designed for decreased donation although living donation is clearly the best treatment. I am new to this space and wonder if you have written previously about living donation or if your company does VR education regarding living donation.
Thank you, Nancy! First off, truly appreciate you sharing, reading and following along. And you're spot on - these barriers exist across the board in transplant as well. I'd love to connect and learn more about your work and the course you teach. And yes, these are very relevant and timely areas for us, so I'm excited to see your note.
Program Overview: “How to Find a Living Donor” is a 90-minute, small group interactive session that provides education about living kidney donation and, most importantly, actively engages participants in the process required to find a living donor.
Need for this program: During their transplant evaluation kidney patients are frequently advised that their best option is to find a living donor, yet there is often little detailed guidance about finding a living donor beyond references to resources or advising patients to “talk to family and friends” and “share their story”. This approach often leaves patients with little understanding of exactly what they need to do, i.e., to whom should they talk? what do they say? what is their story? This program is designed to answer those questions and help patients clearly know what to do to find a living donor.
How this program differs from other programs: Although there are many available resources about finding a living donor, such resources are likely to be inadequate for many patients as it is an entirely different process to passively listen to or read information about seeking a donor rather than to actively engage in the process. Because it is absolutely essential that patients be active in their pursuit of a donor, as contrasted with most medical situations in which a patient can remain relatively passive, active learning and self-advocacy are critical aspects of this program that differentiate it from other programs. A second difference of this program is the consistent discussion of the emotional aspects of finding a living donor. The process of finding a living donor is inherently anxiety-producing, placing patients in an extremely uncomfortable and vulnerable position psychologically. Anticipating, validating and normalizing this range of emotions is intentionally designed to help patients move forward despite these formidable emotional challenges.
Program Description: Roughly the first third of the program provides basic education about kidney donation to assure that participants are able to have informed and accurate conversations with potential donors. The difficult emotional aspects of finding a living donor and the required sustained commitment are emphasized. The second part of the program involves participants actually writing a draft of their story. Participants first share with the group an outline of the key components they want to include in their story. Following feedback, a short time later everyone writes a first draft of their story and again shares this draft aloud for practice and feedback. The third part of the program discusses how and where to share their story, including the variety of options for sharing their story beyond individual conversations. Finally, participants list their decisions about how and with whom they will share their story and assign themselves deadlines (this information is not shared).
My background: I am a PKD patient and the incredibly grateful recipient of a pre-emptive transplant from an unrelated living donor. Beyond my immediate credibility as someone who used the process being described to find a living donor, I am a university professor. From my professional background I am accustomed to teaching and engaging individuals through active learning. Having experienced the entire transplant process myself, I am extremely sensitive to the emotional vulnerability of people who are often desperate, yet frequently incredibly frustrated and discouraged about finding a donor. The goal of this program is to move patients beyond their passive confusion or denial and share with them a pathway as to how they can move forward toward transplant.
Tim as usual this is an incredible piece of work including the resources we need to stay up to speed (get up to speed) with you and the immensely complex issues and factors in kidney care writ large and with home care in specific.
My bias and point of departure being the overlap of the Venn diagram of:
*Home care (specifically aging in place, management of multiple chronic conditions and well-care)
*Care coordination leveraging AI and remote tech HealthTech platforms for families, patients, caregivers (formal and informal), clinical teams
Home dialysis cuts a wide swath across this overlap.
The accelerant of aging of Americans into Medicare and the CMS mandate around VBC helps to create what I call a “burning platform” that is illuminating the way for real innovation and meaningful changes.
The bill you mentioned is evidence that the CMS and congress sees the handwriting on the wall.
Home care is less expensive. Let’s be honest. One driver is economic.
The incumbent players are excited about this and yes it also holds to their espoused company values of making life with Dialysis more bearable and to improve the quality of life.
Not questioning that for a second.
The industry skews to an older demographic and also to one with multiple chronic conditions.
See above Venn diagram and meta forces colliding.
As a member of a family with a loved one in Dialysis and now home dialysis, I have been deeply in the trenches.
To the frustration of the provider I think too, because I /we have been calling out these nine themes and more, but see little progress.
This in spite of valiant clinic staff, HQ systems people, product and tech people at the machine and supplies company, and under-resourced, under trained staff, overwhelmed nephrologists who know too little about the nuances of this modality, and -and here it is- largely terrified, very sick, disempowered and timid patients.
Many /most of whom do not have strong, informed, present advocates.
What I’m coming to, is that our frustrating and exhausting and frankly medically poor experience is of a family with full access, premier medical providers, resources for additional caregivers, three sibs and spouses local to help, and lots of offline medical advice and expertise to hold the care team accountable.
And yet, it is still a mess, from a care coordination standpoint, from an operations standpoint and from a patient experience.
We have family conversations about what must be happening to patients without strong advocates, or resources. It’s heartbreaking to think about.
Medicaid can’t pull this off in this current state of affairs. And this is a serious #access issue that may create so many failures that the whole concept of home Dialysis -which is a great one- may be invalidated or set back.
The providers are too far over their skis.
The result of not truly understanding the patient experience and journey, is that the providers don’t yet at a corporate level seem to understand what we in software and services call the “unit economics” since this whole sub-industry came into being in the context of fee-for-service and on top of that in the severe chronic category (at scale) of older patients with multiple chronic conditions cascading from diabetes to CKD and ESRD.
It’s a whole delivery system and concept built from best guesses and assumptions and reactive small fixes. It’s been allowed to persist because these unit economics have been masked in fuzzy fee for service bundles and unlimited codes for “the small stuff” to just get things done, masking the messiness of the system.
One suggestion is more and better training and education. @IKONA is a shining example of how an incremental improvement in that single factor has immense benefit and high leverage/impact.
And (not but) it is a kind of spot or point solve that masks a larger picture of an industry trying to extend existing skills and expertise beyond its DNA in terms of service model, unit economics, staffing and staff expertise, modalities of care and state of the actual tech (which, while amazing, is not yet at a “consumer” management state.
Thus the mismatch at the leadership level is unrecognized, and the issues are pushed down to the clinic staff level in this “new” model.
Because there is still so much chaos and so little resourcing at the clinic level, these issues cascade onto the patient and family (if there is one present).
The whole thing collapses when no ongoing resources are present for the patient.
And yet. We know viscerally that home care is more effective in all of healthcare when appropriate) and that “on paper”’it should be a net net benefit for the wellbeing of the patient, a money saver for the payer (mostly CMS), a substantial expansion of business in scalable new sector for providers (just ask my Private equity friends and public company analysts).
But because most of the elderly patients and their families (If they have any /present) are largely unempowered, very sick, dealing with other chronic conditions, the real disconnects have not made their way up the chain.
Sure there are many success stories.
The failures are hidden and largely undocumented.
Nobody wants to dare challenge an insanely stressful and dire situation for fear that they will be “fired” from home dialysis by frustrated providers who are frustrated themselves at the clinic level, and nephrologists who as a group typically outsource the nitty gritty of dialysis detail to centers.
How can we take this data and make real change?
Be more honest about how “beta” home dialysis is now, and ask the provider community to over-resource training at the clinic staff level and ongoing at the patient level, supplies operations, and back office systems from the manufacturer level.
(I asked bluntly one manufacturer (a large public company) and the VP said offline that they are rushing these to market so fast that user interface, training and call center user support are being left to the last thing.. only when things endanger patients does attention go to any kind of improvement. They can already sell all they can make without any improvements).
My bias again being care coordination in this context, I believe that the best hope is with the VBC mandate, more funding earmarked for visiting caregivers /coaches and more *ongoing* education like what your team does, and a more empowered and vocal boomer and gen x population shocking the old line incumbents into better accountability.
In the end this is a consumer self-managed service.
That’s not easy.
That’s a new concept to healthcare.
And certainly new to kidney care incumbents across the value chain.
There will be some uncomfortable growth, but it is healthy.
Matt, always blown away by the depth of your commentary and line of questions. I think the venn diagram overlap you're describing is something worth visualizing. Maybe something we can work on together - what do you think?
![Signals From [Space]](https://substackcdn.com/image/fetch/w_36,h_36,c_fill,f_webp,q_auto:good,fl_progressive:steep,g_auto/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fa4736f49-6a20-4fd6-a3de-d48cb4b105f2_375x375.png)
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Excellent and insightful review of the IM-HOME article.
I'm the grateful recipient of a preemptive kidney txp from a living donor. What struck me in reading your piece is that the same barriers to home dialysis (save for space at home) are barriers to living donation transplant: fear, lack of education, concern with resources, payment systems, provider perspectives in evaluation, etc. I teach a course at my transplant center on "How to Find a Living Donor" and have encounter these same concerns in almost all patients - in part because the entire transplant structure is designed for decreased donation although living donation is clearly the best treatment. I am new to this space and wonder if you have written previously about living donation or if your company does VR education regarding living donation.
Thank you, Nancy! First off, truly appreciate you sharing, reading and following along. And you're spot on - these barriers exist across the board in transplant as well. I'd love to connect and learn more about your work and the course you teach. And yes, these are very relevant and timely areas for us, so I'm excited to see your note.
Here's a brief description of the class.
"How to Find a Living Donor”
Nancy A. Marlin, Ph.D.
Transplanted, December 2018
Program Overview: “How to Find a Living Donor” is a 90-minute, small group interactive session that provides education about living kidney donation and, most importantly, actively engages participants in the process required to find a living donor.
Need for this program: During their transplant evaluation kidney patients are frequently advised that their best option is to find a living donor, yet there is often little detailed guidance about finding a living donor beyond references to resources or advising patients to “talk to family and friends” and “share their story”. This approach often leaves patients with little understanding of exactly what they need to do, i.e., to whom should they talk? what do they say? what is their story? This program is designed to answer those questions and help patients clearly know what to do to find a living donor.
How this program differs from other programs: Although there are many available resources about finding a living donor, such resources are likely to be inadequate for many patients as it is an entirely different process to passively listen to or read information about seeking a donor rather than to actively engage in the process. Because it is absolutely essential that patients be active in their pursuit of a donor, as contrasted with most medical situations in which a patient can remain relatively passive, active learning and self-advocacy are critical aspects of this program that differentiate it from other programs. A second difference of this program is the consistent discussion of the emotional aspects of finding a living donor. The process of finding a living donor is inherently anxiety-producing, placing patients in an extremely uncomfortable and vulnerable position psychologically. Anticipating, validating and normalizing this range of emotions is intentionally designed to help patients move forward despite these formidable emotional challenges.
Program Description: Roughly the first third of the program provides basic education about kidney donation to assure that participants are able to have informed and accurate conversations with potential donors. The difficult emotional aspects of finding a living donor and the required sustained commitment are emphasized. The second part of the program involves participants actually writing a draft of their story. Participants first share with the group an outline of the key components they want to include in their story. Following feedback, a short time later everyone writes a first draft of their story and again shares this draft aloud for practice and feedback. The third part of the program discusses how and where to share their story, including the variety of options for sharing their story beyond individual conversations. Finally, participants list their decisions about how and with whom they will share their story and assign themselves deadlines (this information is not shared).
My background: I am a PKD patient and the incredibly grateful recipient of a pre-emptive transplant from an unrelated living donor. Beyond my immediate credibility as someone who used the process being described to find a living donor, I am a university professor. From my professional background I am accustomed to teaching and engaging individuals through active learning. Having experienced the entire transplant process myself, I am extremely sensitive to the emotional vulnerability of people who are often desperate, yet frequently incredibly frustrated and discouraged about finding a donor. The goal of this program is to move patients beyond their passive confusion or denial and share with them a pathway as to how they can move forward toward transplant.
Tim as usual this is an incredible piece of work including the resources we need to stay up to speed (get up to speed) with you and the immensely complex issues and factors in kidney care writ large and with home care in specific.
My bias and point of departure being the overlap of the Venn diagram of:
*Home care (specifically aging in place, management of multiple chronic conditions and well-care)
*Care coordination leveraging AI and remote tech HealthTech platforms for families, patients, caregivers (formal and informal), clinical teams
Home dialysis cuts a wide swath across this overlap.
The accelerant of aging of Americans into Medicare and the CMS mandate around VBC helps to create what I call a “burning platform” that is illuminating the way for real innovation and meaningful changes.
The bill you mentioned is evidence that the CMS and congress sees the handwriting on the wall.
Home care is less expensive. Let’s be honest. One driver is economic.
The incumbent players are excited about this and yes it also holds to their espoused company values of making life with Dialysis more bearable and to improve the quality of life.
Not questioning that for a second.
The industry skews to an older demographic and also to one with multiple chronic conditions.
See above Venn diagram and meta forces colliding.
As a member of a family with a loved one in Dialysis and now home dialysis, I have been deeply in the trenches.
To the frustration of the provider I think too, because I /we have been calling out these nine themes and more, but see little progress.
This in spite of valiant clinic staff, HQ systems people, product and tech people at the machine and supplies company, and under-resourced, under trained staff, overwhelmed nephrologists who know too little about the nuances of this modality, and -and here it is- largely terrified, very sick, disempowered and timid patients.
Many /most of whom do not have strong, informed, present advocates.
What I’m coming to, is that our frustrating and exhausting and frankly medically poor experience is of a family with full access, premier medical providers, resources for additional caregivers, three sibs and spouses local to help, and lots of offline medical advice and expertise to hold the care team accountable.
And yet, it is still a mess, from a care coordination standpoint, from an operations standpoint and from a patient experience.
We have family conversations about what must be happening to patients without strong advocates, or resources. It’s heartbreaking to think about.
Medicaid can’t pull this off in this current state of affairs. And this is a serious #access issue that may create so many failures that the whole concept of home Dialysis -which is a great one- may be invalidated or set back.
The providers are too far over their skis.
The result of not truly understanding the patient experience and journey, is that the providers don’t yet at a corporate level seem to understand what we in software and services call the “unit economics” since this whole sub-industry came into being in the context of fee-for-service and on top of that in the severe chronic category (at scale) of older patients with multiple chronic conditions cascading from diabetes to CKD and ESRD.
It’s a whole delivery system and concept built from best guesses and assumptions and reactive small fixes. It’s been allowed to persist because these unit economics have been masked in fuzzy fee for service bundles and unlimited codes for “the small stuff” to just get things done, masking the messiness of the system.
One suggestion is more and better training and education. @IKONA is a shining example of how an incremental improvement in that single factor has immense benefit and high leverage/impact.
And (not but) it is a kind of spot or point solve that masks a larger picture of an industry trying to extend existing skills and expertise beyond its DNA in terms of service model, unit economics, staffing and staff expertise, modalities of care and state of the actual tech (which, while amazing, is not yet at a “consumer” management state.
Thus the mismatch at the leadership level is unrecognized, and the issues are pushed down to the clinic staff level in this “new” model.
Because there is still so much chaos and so little resourcing at the clinic level, these issues cascade onto the patient and family (if there is one present).
The whole thing collapses when no ongoing resources are present for the patient.
And yet. We know viscerally that home care is more effective in all of healthcare when appropriate) and that “on paper”’it should be a net net benefit for the wellbeing of the patient, a money saver for the payer (mostly CMS), a substantial expansion of business in scalable new sector for providers (just ask my Private equity friends and public company analysts).
But because most of the elderly patients and their families (If they have any /present) are largely unempowered, very sick, dealing with other chronic conditions, the real disconnects have not made their way up the chain.
Sure there are many success stories.
The failures are hidden and largely undocumented.
Nobody wants to dare challenge an insanely stressful and dire situation for fear that they will be “fired” from home dialysis by frustrated providers who are frustrated themselves at the clinic level, and nephrologists who as a group typically outsource the nitty gritty of dialysis detail to centers.
How can we take this data and make real change?
Be more honest about how “beta” home dialysis is now, and ask the provider community to over-resource training at the clinic staff level and ongoing at the patient level, supplies operations, and back office systems from the manufacturer level.
(I asked bluntly one manufacturer (a large public company) and the VP said offline that they are rushing these to market so fast that user interface, training and call center user support are being left to the last thing.. only when things endanger patients does attention go to any kind of improvement. They can already sell all they can make without any improvements).
My bias again being care coordination in this context, I believe that the best hope is with the VBC mandate, more funding earmarked for visiting caregivers /coaches and more *ongoing* education like what your team does, and a more empowered and vocal boomer and gen x population shocking the old line incumbents into better accountability.
In the end this is a consumer self-managed service.
That’s not easy.
That’s a new concept to healthcare.
And certainly new to kidney care incumbents across the value chain.
There will be some uncomfortable growth, but it is healthy.
Count me #optimistic
Keep up the great work!
Matt, always blown away by the depth of your commentary and line of questions. I think the venn diagram overlap you're describing is something worth visualizing. Maybe something we can work on together - what do you think?
happy to collaborate. Let's do it.