Lessons for Health Systems from a Rare Disease Patient Advocate

Chronic illnesses are affecting an increasing portion of the population, with nearly 50% of Americans currently managing such conditions. Despite the growing number of patients requiring long-term care, the healthcare system is still designed around acute, short-term issues, leaving those with chronic diseases feeling lost in a complex maze of care. How can the healthcare system evolve to better support patients navigating these complex, long-term conditions?

With over 15 years of entrepreneurial experience, Kristy Dickinson, the Founder of Chronically Simple and Kristy Dickinson Consulting, is a patient advocate and digital health consultant passionate about reshaping the patient and caregiver experience. Drawing on her personal experience as a patient with a rare genetic disorder, she stresses the importance of integrating the patient’s voice throughout the healthcare process. Kristy built a digital tool to replace cumbersome binders of medical records, showing the necessity of innovative, patient-centered solutions. She urges healthcare professionals to treat patients as key team members, integrating them into the design of systems and care plans to improve outcomes and reduce the overwhelming administrative burden on those managing chronic conditions.

In this episode of For the Better, Ben Cash welcomes Kristy Dickinson, a patient advocate and digital health consultant, to discuss the challenges and opportunities in managing complex health conditions. Kristy shares her eye-opening experience with chronic illness, offers strategies for improving patient experiences, and highlights the value of digital tools in healthcare. Tune in for insights on prioritizing comprehensive care and the power of patient voices in driving healthcare efficiency and effectiveness.

Here’s a glimpse of what you’ll learn:

[01:18] Kristy Dickinson on the staggering statistics of chronic disease impact and cost in the US
[03:12] The football team metaphor and its relation to the healthcare ecosystem
[07:05] Kristy's unexpected journey from patient to patient advocate
[09:59] Why Kristy created Chronically Simple to ease the burden of managing her healthcare
[14:03] Rare diseases' unique challenges and the silos they expose in the healthcare system
[16:01] The need to improve patient engagement and prioritize mental health support
[22:05] How can healthcare professionals operationalize the patient voice to drive better outcomes?
[26:05] Kristy envisions a patient-friendly healthcare system with seamless access to records

Resources mentioned in this episode:

Quotable Moments:

"We're all working towards building something that will ultimately improve a patient's outcome or quality of life."
"In healthcare, we don't work cohesively as a team."
"My healthcare providers don't learn about us in medical school."
"Patients are desperate to leave the system better than they found it."
"We should not still be sending faxes in healthcare."

Action Steps:

Solidify the patient-care team dynamic: By treating patients as integral team members in healthcare, you can enhance communication, resulting in more coherent care plans.
Prioritize comprehensive care: Holistic approaches to patient treatment ensure that all aspects of a patient's health are considered, leading to better management of complex conditions.
Integrate mental health support with diagnoses: Addressing the psychological impact of chronic diseases alongside physical treatment facilitates better patient outcomes and well-being.
Embrace technology for healthcare management: Digital solutions can streamline patient data management, reducing the administrative burden on patients.
Operationalize patient feedback: Including patient input from the start to finish of healthcare projects ensures that patient needs and insights drive innovation and efficacy.

Sponsor for this episode...

This episode is brought to you by Reason One, a group of problem-solvers and change-makers who help those who do good, do better. Whether you work in healthcare, a nonprofit, or a mission-driven organization, we help create beautiful, effective experiences for you and the people you care about.

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