{"id":22990,"date":"2025-02-05T15:16:09","date_gmt":"2025-02-05T20:16:09","guid":{"rendered":"https:\/\/participatorymedicine.org\/epatients\/?p=22990"},"modified":"2025-02-05T15:16:09","modified_gmt":"2025-02-05T20:16:09","slug":"more-important-than-time-and-money","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2025\/02\/more-important-than-time-and-money.html","title":{"rendered":"More important than Time and Money"},"content":{"rendered":"
Mortality is a fabric more important than money, politics, and belief systems.\u00a0 We all share the same responsibility of health; the only variable is the time in our life we acknowledge it.<\/p>\n
Rare\/undiagnosed consumer behavior is the most intense example of participatory responsibility.<\/p>\n
When patients and caregivers are diagnosed with severe rare conditions or seek a diagnosis for debilitating symptoms, they very quickly decipher what they can and cannot control.\u00a0 This advanced behavior allows rare\/undiagnosed consumers to activate their wholly aligned intentions and abundant time. The primary and most helpful use of this energy is data aggregation.<\/p>\n
Something very special happened last week: At 5 am on Wednesday at Newark International Airport, I was eager to fly to San Francisco to attend an Advanced Research Project meeting as part of Health and Human Services (HHS).\u00a0 The Thursday meeting was for a curated collection of 150 leading experts in Artificial Intelligence (AI), Genomics, Informatics, Data Science, Health Data Interoperability and Rare Disease Research to help expedite the diagnostic odyssey through leveraging AI.<\/p>\n
Shortly after landing, I received news about the executive memo instituting a \u201cfreeze\u201d for travel and external communications for the HHS.\u00a0 Stepping off a 6-hour flight, my brain was working to process this news.\u00a0 The bizarre and frustrating helplessness reminded me of many unfavorable diagnosis moments I\u2019ve experienced with my sons.<\/p>\n
My 5-year-old was born with ultra-rare Diamond Blackfan Anemia<\/a>; treatments include steroids, blood transfusions and bone marrow transplant. He is also autistic.\u00a0 My 3-year-old was born with VACTRL association<\/a>. He now has unexplained profound deafness and neurological tumors.\u00a0 These \u201cOh-No! moments\u201d have sharpened my processing ability to accept the environment I cannot change and understand choices I have.<\/p>\n After my second son was born with a different rare diagnosis, but subjected to the same antiquated use of data and technology tools, I realized the power of my perspective to help improve healthcare.\u00a0 I put my career as digital product UX designer on hold indefinitely and spent the next two and half years traveling and meeting\u00a0 ecosystem leaders.<\/p>\n We are on the cusp of a new paradigm in medicine. Advanced consumer behavior, national policy and AI capability present a new environment for us to leverage 60 Zetabytes of collective health data.<\/p>\n Thursday\u2019s Advanced Research Project meeting marks a critical focus on the heightened participatory behavior of rare disease communities.\u00a0\u00a0 Consumers of undiagnosed and rare chronic congenital genetic diseases know their diagnoses are underfunded and underserved.\u00a0 As consumers with wholly aligned and abundant time to devote toward positive outcomes, they deploy their energy to help providers and researchers in any way they can.\u00a0 This consumer energy is the gateway for AI tools to leverage massive health data sets for more effective diagnosing, treatment and discovery.<\/p>\n Making sure all health data is accounted for and harmonized into a linear data set, is critical for rare\/undiagnosed consumers.\u00a0 With access to complete data sets, providers have comprehensive details to help optimize effective diagnoses and treatments, but do they have time to analyze them?<\/p>\n AI is an extraordinary data processing solution to limited human bandwidth.<\/p>\n