CONNECTED HEALTH CONFERENCE • SAVE THE DATE • October 16-18, 2019 • Boston, MA

 

OCTOBER 16-18, 2019

BOSTON, MA

 

October 16-18, 2019 | Boston, MA

The AI Patients Want & Need Now

Welcome to the first blog in the Patient Voice series. The Patient Voice is key to the success of connected health and a strong theme for the Connected Health Conference.

Written by: Grace Cordovano, PhD, a board-certified patient advocate.

 

The world is our oyster when it comes to artificial intelligence (AI). We are witnessing the equivalent of a modern-day gold rush. Everyone is clamoring to benefit from AI’s potential to reduce costs, enhance decision making, streamline operations, improve outcomes, and propel discovery and agility. The Centers for Medicare and Medicaid (CMS) just announced their $1.65 million Artificial Intelligence Health Outcomes Challenge to develop a tool that may improve outcomes, quality of care, and decrease caregiver administrative burden.  Ironically, patients are being glaringly left out. Where are the AI tools for patients to use and benefit from?

As we digitize and strive for Health 3.0, innovators must recognize the seismic shifts that are influencing a healthcare metamorphosis.

Gone are the days where only doctors know best. There is a clear shift from paternalistic to participatory medicine. Patients and care partners demand to be involved in shared decision-making. They expect:

  • care based on their values, preferences, and needs.
  • all treatment options presented.
  • transparency regarding their quality of life, costs, privacy, and data use.
  • to be guided actionably by digital tech and data.
  • continuity in their care.

Point of care is no longer where the doctor is; it’s where patients are. The majority of care happens outside the traditional four walls of medicine. Health 3.0 must meet them where they are: online. Unfortunately, patients are facing technological debt and an exclusionary digital silo. We are actively creating a new social determinant of health.

Patients are given a diagnosis as if that path has never been walked before. The most common questions people ask when navigating their health are: “What do I do now? What do I do next?”

Upon receiving a diagnosis, and while living with one (or many) health conditions, patients are online searching for information.  They’re networking to find people with a similar diagnosis and experiences who can offer support, answers, resources, shortcuts, and empathy. Where a diagnosis delivers chaos, peer-to-peer health offers a trusted, safe avenue to knowledge and clarity. Social media platforms have removed many barriers and hierarchies to make peer-to-peer health advice readily available around the clock and worldwide.

The internet has served us well for over 30 years. We’ve seen Kim Kardashian break the internet and there's even a movie titled, “Ralph Breaks the Internet.” It’s time for patients and care partners to break the internet.

Patients need a tool to guide their care in real-time, rooted in evidence-based guidelines, as well as real-world experience crowd-sourced from peer-to-peer health. AI is a student that needs to be trained. We are missing lived experiential data curated by patients and care partners as an essential component.

When I received my diagnosis of advanced lymphoma 11 years ago, I was overwhelmed and lost. Looking back, I wish I could have searched the internet for my diagnosis and had access to a list of steps I needed to take to prepare for each milestone of my trajectory and how to get there, including warnings of delays, pitfalls, success stories, and even hacks. Not just from a clinical perspective, but also from a life perspective. Health 3.0 must deliver life-focused digital tools and solutions.

Months later, when my advanced lymphoma was cleared as histoplasmosis -- a fungal infection I acquired on my honeymoon -- there was nowhere to record my knowledge and experiences to help the next person, as well as other doctors and care teams. We are missing a digital baseplate to serve as a foundation for Health 3.0’s digital revolution, patient empowerment, and the consumerization of healthcare.

Let’s solve this! We need to:

  1. build a universal, transparently structured digital platform, leveraging roots in social media & evidence-based practices to bridge key health, digital literacy, and care coordination gaps.
  2. design a foundation with interactive fields to ethically capture data. 
  3. include patients and care partners in the creation of this digital foundation, as well as in the development of AI algorithms.
  4. create shared-decision making pathways based on a unified view of the diagnosis (clinical and life-focused) to guide informed decision-making at the point of care.

By far, the biggest opportunity that AI has yet to deliver is activated intelligence designed with and for patients and care partners. Until then, I’m not impressed.

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About Grace Cordovano

Grace Cordovano, PhD is a board-certified patient advocate and founder of Enlightening Results. She strategically guides patients with empathy, ensuring they are armed with the most pertinent, easy to understand information and tools to make empowered decisions about their care. Frustrated by the severe challenges patients face, she is committed to being a patient experience enhancer. 

Dr. Cordovano is a champion for the use of digital tech and social media to bridge informational silos and fallout from poor interoperability. She believes that transformation to health 3.0 must happen through the lens of empathy to deliver human-centered care.

Follow her on Twitter at @GraceCordovano

Opinions expressed in the Patient Voice blogs are not necessarily those of PCHAlliance or HIMSS but of the authors.

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