Situation: People with Type 1 Diabetes know their care better than anyone because they live with it and manage it daily.

Problem: Some HCPs' training in T1D is not up to date. Some do not perform patient-centered care.

Consequence: PWT1D receives low-quality care or are not satisfied with the care they received.

Solution: We designed T1D Care Directive , a lightweight tool that promotes shared decision-making. A more elaborate version is on the way.

<aside> 🔹 Intended readers: People who are interested in improving PWT1D's (people with type 1 diabetes) healthcare experience.

</aside>

Overview

What is a Type 1 Diabetes Care Directive?

The Type 1 Diabetes Care Directive is a one-page document detailing the diabetes management, wishes, and preferences for shared decision-making for PWT1D. The document aims to improve the quality of care for PWT1D in a healthcare setting by providing patients with an ability to initiate and engage in shared-decision making with autonomy, ultimately initiating a conversation with healthcare providers in healthcare settings to improve the quality of care received by the person with type 1 diabetes.

Affiliation

UC San Diego Design Lab — Diabetes Design Initiative

Team

Jodie Li, Jhea Espares, Denise Tang, Jessie Lin

Mentors

Research Lead, Dana Lewis; T1D Mentor, Joanne Milo

Problem

The lack of type 1 specific diabetes education for non-specialists in the healthcare system has led to the mistreatment of people with type 1 diabetes during in hospital visits. How might we lessen the burden or avoid mistreatment by developing a lightweight tool to support PWT1D?

Vision Statement

We envision a world free of uninformed and unilateral healthcare decisions, such that PWDT1 are in the driver's seat and are considered integral to all shared-decision making in healthcare settings.

Solution

A lightweight digital and paper tool easily accessible and transferable to help initiate and support a PWT1D in their healthcare settings.


Introduction

People with type 1 diabetes (PWT1D) are now living longer than ever before, thanks to advances in modern insulin, diagnostics, and therapy devices. But the healthcare system is not ready for the aging population for Type 1.

Our team conducted need-finding research related to the challenges of aging while living with type 1 diabetes looking into a broad range of topics such as technology usage, diabetes management, advanced care plan, and community support by interviewing PWDs and their loved ones.

We found PWD don't trust others' ability to manage their diabetes. This results in a double burden of self-management even though they are aging and will eventually become more dependent on others like loved ones, HCPs, the hospital, and care settings. Also, seeking healthcare is challenging for people living with Type 1 Diabetes as well. HCPs’ lack of education on T1D, the rigidity of hospital policies, and non-patient-centered care lead to low quality of care and low satisfaction rates.

We also collected numerous stories where PWDs faced life-and-death situations in hospitals because undertrained HCPs misdiagnosed them, denied them insulin, etc. As a result, this fear for losing control over one's own care in hospitals prevents thoughtful preparation for healthcare settings beyond their designated care team e.g. out or inpatient surgery or emergency room, etc.

Design Brief

Given our understanding of the problem spaces through our prior need-finding research, we narrowed the focus onto the need to bridge the gap between people with type 1 diabetes and healthcare providers. We then asked ourselves

“How might we design a plan for an older person with type 1 diabetes that supports shared decision making, education, and advocacy as they increase interactions with the healthcare system?”

While there are care plans and advance care planning and advance directives available to people, to our knowledge, there is not a “living directive designed for people living with diabetes. Therefore, we propose a “T1D care directive” that could be useful to aid people with type 1 diabetes.