In the fall of 2021, a group of T1D experts was gathered by the Helmsley Charitable Trust, a leading funder of T1D care and research, for a two-day meeting to begin answering the question:
If we could create a healthcare delivery system for people with T1D – unconstrained by tradition or reimbursement concerns – what would it look like?
In other words, how exactly should T1D care be designed? It was the first meeting for what would become Blue Circle Health, a philanthropically-funded healthcare delivery system for people with T1D living in under-resourced communities.
It’s now 10 months since that first meeting and 6 months since the inception of Blue Circle Health. Though we have a tremendous amount of work to do, we stand at the precipice of an important milestone. On September 1st we plan to launch in partnership with up to 15 Federal Qualified Health Centers (FQHCs) across the state of Florida. We’ll launch first with diabetes support coaching services while we build out our team and infrastructure to be able to offer more support and care in the coming months.
As part of our efforts, we’ll do our best to share honest progress updates and lessons learned along the way, starting here with an account of our first principles, how they came to be, and how they’ve informed our decisions.
Why Blue Circle Health?
People with T1D must assume the role of their beta-cells – testing their blood sugar levels many times each day and planning their meals and multiple doses of insulin accordingly. It’s a 24/7 disease and the only one that forces people to measure and self-administer a potentially deadly drug many times daily to stay alive.
Fortunately, the drugs and technologies to help people with T1D lead healthy lives exist. Unfortunately, the design of the US healthcare system makes it difficult for people to access and afford the life saving supplies and support they need. As a result, many suffer terrible complications and die far too early. Most suffer financial and mental hardships in the process. This is especially true among people in under-resourced communities.
Our goal is to build a St. Jude’s-like program specifically for T1D that cares for those regardless of their ability to pay. But how exactly to do that – what services to offer, where, when, and to whom – introduces an enormous number of decisions, each one of which carries consequences.
To help guide the team in making these decisions, we began with a set of Guiding Principles. These principles are offered along with descriptions of progress and repercussions.
|Blue Circle Health Guiding Principles|
|We will focus on people with lesser means and fewer resources.|
|We will find ways to ensure people with T1DM have access to insulin, supplies, technology, diabetes education, management, treatment and related psychological care and support regardless of their ability to pay.|
|We will not assume to know the needs of the people we serve. We will learn by listening.|
|We recognize that trusted relationships are the building blocks of improved outcomes.|
|We will take a whole-person, individualized approach to care.|
|We will look to capitalize on existing services and resources when available.|
|We will be a learning organization and will rely on data and continuous improvement to make decisions.|
|We will not let people fall through the cracks – we will track and support their journey throughout our involvement.|
|We will give a voice to the people who never get a seat at the table designing diabetes care, medications and devices..|
|We will serve as a model of how T1D care can and should be delivered to as many people as possible.|
We will focus on people with lesser means and fewer resources.
The very first principle put forward was that we will improve as many lives as possible. It’s a pretty obvious starting point for any philanthropic endeavor. However, there was also the desire to help those in under-resourced communities. Those with fewer resources will likely consume more, reducing the number of people we can help.
It was an early moral math problem that reinforced the need for guiding principles.
Within hours of meeting we had our first important decision to make. Those in the room agreed that the impact most worth achieving was in helping those who have traditionally been disadvantaged by our healthcare system and society in general.
This principle led to our strategy of partnering with Federally Qualified Health Centers. FQHCs are community-based clinics that are federally funded to care for people in under-resourced communities. FQHCs mostly deliver primary care and typically do not have T1D specialists on staff. Working with FQHCs will allow us to connect to the people we hope to serve while also ensuring that they have access to critically important primary care.
We will find ways to ensure people with T1DM have access to insulin, supplies, technology, diabetes education, management, treatment and related psychological care and support regardless of their ability to pay.
The care received by people with T1D today is governed by what is reimbursed by insurance providers. Even for those with great insurance, access to care and supplies can be a battle with months-long delays and thousands of dollars in out of pocket expenses. For those with less or no insurance, access to care and life-saving supplies is incredibly challenging, forcing far too many people to ration or go without medicine and supplies.
As a philanthropically funded healthcare delivery organization, we can afford to design care based on what’s best for the patient. This includes prior authorization and insurance navigation support when insurance exists and free T1D-related medicine and supplies when it doesn’t. It also means that we can design our care model to be far more flexible and less restrictive than what is currently reimbursed.
We will not assume to know the needs of the people we serve. We will learn by listening.
As obvious as this principle seems, there isn’t a strong tradition of asking people with chronic conditions what their needs are and designing care accordingly. The T1D space is no exception, where research has shown that many people feel unheard or even scolded by their endocrinologist. All involved, including and especially the endocrinologists in the room, felt it important that Blue Circle Health recognize and correct this shortcoming.
Reflecting back, our activities have thus far been consistent with this principle. We began by running focus groups of people with T1D from under-resourced communities in the southern Florida area. The Helmsley Charitable Trust employed IDEO.org to conduct more focus groups of people with T1D from other parts of the country. We met with leaders at FQHCs and conducted a focus group of primary care providers. We also conducted a focus group of T1D health coaches, each one of which has T1D and was raised in the same communities as the people they help. We are working closely with a team of coaches, diabetes specialists throughout the process, including certified diabetes educators, nurses, and doctors.
These interviews informed the first iteration of the Blue Circle Health Patient Journey. It is a hypothetical narrative describing a person’s experience with Blue Circle Health from diagnosis to a state of successful self-management. This allowed our multidisciplinary team to come together on what services we should offer and how they should be offered.
While I feel pretty good about our start, this review of principles is a helpful reminder. We cannot lapse into complacency. We will need to remain committed to testing our hypotheses of what comprises “best possible care” by asking those we serve if we are meeting their diverse needs. While it helps that our diabetes support coaches live with T1D and are hired from the communities they serve, we will form an advisory panel of the people we serve.
We recognize that trusted relationships are the building blocks of improved outcomes.
Dr. Toyin Ajay, CEO of CityBlock, once told me that the most important drug we can give to people is Vitamin E – empathy. Every doctor and nurse knows this and strives to build rapport with those they care for. Unfortunately, the business of healthcare makes this difficult. Short, infrequent visits in sterile rooms are not exactly conducive to building personal relationships.
We believe an important foundation for trust is a single, accessible point of contact. For this reason, our care model centers on trained diabetes support coaches. The coach serves as the primary point of contact – the guide for those we serve throughout their journey. They can be accessed when they’re needed in whatever modality makes the most sense for the individual with T1D.
It’s a model learned from the ECHO Diabetes program led by Drs. Michael Haller, Ashby Walker, David Maahs and others and also informed by Dr. Michael Harris of OHSU and his NICHE program. Both proved the importance of a trained peer as a friend, mentor, and guide for supporting people with chronic conditions.
In fact, the first wave of coaches will be transitioned from the Diabetes ECHO program at the University of Florida as that research project draws to a conclusion. Each of the coaches hired are from the same communities as the people we serve, speak the same language, and live with T1D.
Of course, trust is more than a single point of contact. It’s the end result of being there when needed – of solving problems consistently and efficiently. We have quite a bit of work ahead of us in this regard.
We will take a whole-person approach to care.
Our focus is and will be helping people with T1D. However, we recognize that there is more to type 1 diabetes management than giving insulin. Ongoing support, education, and behavioral health care are critically important.
Toward this end, care will escalate from coaches to members of a multidisciplinary team that includes nurses, advanced practice nurses, registered dietitians, pharmacists, insurance navigators, behavioral health specialists, social workers, and endocrinologists (with experience in T1D care, with or without a CDCES) with experience supporting people with T1D. In addition, connections will be made with ancillary providers through the patient’s primary care group to include podiatrists, optometrists and ophthalmologists, nephrologists, cardiologists, ob/gyne’s and others.
The community aspect of T1D is also important as people with this condition can feel isolated. An important feature of the ECHO program that we plan to continue is planned in-person and virtual group sessions and social events.
We will look to capitalize on existing services and resources when available.
This principle is a reflection of our responsibility to help as many people with T1D in under-resourced communities as possible. This isn’t possible if we don’t look to capitalize on whatever community resources are already available, from providers to food shelters to transportation companies. Our employ of a licensed social worker familiar with the southern Florida market is intended to help facilitate this principle.
It’s also a recognition that T1D is a self-managed disease. For this reason, we must be mindful that our goal is not just to care for but to teach those we serve, and their families and friends when appropriate, how to care for T1D. A phrase that has been used often since our inception is “engage, educate, and empower.”
We will be a learning organization and will rely on data and continuous improvement to make decisions.
As a care delivery organization with a fixed budget, BCH will not be successful in our efforts to establish trust, improve health, nor empower people to self-manage their disease if we cannot deliver the right services to the right people at the right time. We therefore felt it critical to codify the principle that Blue Circle Health must be a learning organization.
One of our top priorities is to build an infrastructure that allows us to gather data and learn without placing undue burden on the care team or the people we serve. This includes collecting information along the care journey related to social determinants of health, mental well being, and disease progression. This information will be used to improve operations, intervene with specific services at specific times, and to facilitate clinician, coach, and individual decision support.
Progress to date includes access to feeds of continuous glucose monitor data from several manufacturers and validated predictive models able to anticipate dangerous situations before they become acute (e.g., rising A1c and diabetic ketoacidosis). However, there is much work to be done as today’s electronic health records are designed more for billing than for learning, and few useful population health tools for people with T1D exist.
We will not let people fall through the cracks – we will track and support their journey throughout our involvement.
A recurrent theme from focus groups of people with T1D was the constant “dead ends.” Dead ends in trying to find an endocrinologist that will take Medicaid. Dead ends in trying to get approval from insurers for needed equipment. Dead ends in lapses of coverage for life-saving drugs. We felt it important to specify that Blue Circle Health will do its best to design care that is not only longitudinal and coordinated but also has safeguards to avoid dead ends.
We will give a voice to the people who never get a seat at the table of care, drug, and device design.
Several of the stakeholders during that first meeting made clear that the development of devices, drugs, and the design of most research doesn’t account for the needs of people in under-resourced communities. Participation in research to improve representation and offer newer interventions to this population was a concept that many felt strongly about.
We see this as a natural extension of our mission, and data and learning will be woven throughout our operations. However, formal research is a carefully regulated affair that comes with necessary overhead and oversight. While inclusion of this underrepresented population in research is important, we must first learn how to deliver care as efficiently and effectively as possible.
What we can do to support research from day one is ensure that our informed consent for participating in Blue Circle Health includes consent for data reuse for purposes deemed ethically and scientifically valid by an independent advisory. We will also obtain permission for recontact should people be found eligible to participate in future research.
We will serve as a model of how T1D care can and should be delivered to as many people as possible.
I am confident that we will improve the quality of care and the outcomes of the people we serve. The unfortunate reality is that the bar for improvement is set pretty low by the current standard of care delivered. However, to become a model, one needs to be able to demonstrate not just improved outcomes but the ability to do so cost efficiently. Of all of the things we will measure, the ratio of improved outcomes to the cost of achieving improvement is among the most important.
Since the start of writing this the team put forward two new guiding principles for care that will be codified at an upcoming meeting with staff and the board. I’ve included them because I think they’re incredibly important additions:
- We will include the loved ones and caregivers of people with T1D, knowing how this disease involves more than the patient alone.
- We never blame, judge or shame a person with T1D; our approach will involve empathy, understanding, and respect.
To date, the team’s work has touched upon what data to gather, how to gather it, navigating the tricky compliance landscape of Florida, establishing the appropriate insurance, hiring great people, building trust with PCPs and FQHC leadership, and organizing training sessions in July and August. It’s exhilarating and exhausting in all the best ways as we race to start having an impact on people’s lives. It won’t be easy work but we’re lucky to have a great team and support system. As we launch coaching and additional services, we’ll do our best to share progress.
If you know anyone that might benefit from learning of our progress and mistakes, feel free to share this and/or the sign-up link for our mailing list and we’ll follow up with more.
Thanks for your support and for keeping up with our journey.
Leonard D’Avolio, PhD
CEO, Blue Circle Health
Brigham and Women’s Hospital
Harvard Medical School