Effective solutions & ethical guardrails for data-driven decision-making, care, & treatment require patient involvement in policy & technology development.
Summary
Patient Insights on Health Access, Technology, and Public Policy
Data should inform decision-making for a triad of patients, caregivers, and clinician partners.
Some patients desire data sovereignty - the ability to access, use, and share their health data.
However, managing personal health data can be overwhelming for individuals.
Transparency about data usage and privacy is crucial for building trust.
There are concerns about potential stigma and discrimination from data misuse.
Including patients in policy and technology development can lead to more effective solutions.
Ethical guardrails are needed, particularly for data aggregation and monetization by companies.
There's a mix of optimism and pessimism about the future of health data management.
Collaboration with patients in development processes can increase the likelihood of successful outcomes.
Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below.
Contents
Table of Contents
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EpisodeProemPodcast introLevel set – Get Your Patient On90% Similar, 100% HumanInspiration from Data: Weak Link in our HealthRelationship Triad for Decision-Making: Patient, Caregiver, Clinician PartnerUnintended Consequences – Crystal Ball GazingData Sovereignty – Self-GovernanceFederated Model of Data (Confederacy of Confederacies)Call to actionTrust Communities – Relaxed ControlTransparency – Knowing What You Don’t KnowAnonymous Data. Really?Guardrails – Safety and PrivacyStigma and DiscriminationPessimism or Optimism About the FutureReflectionData and Decision-MakingData Sovereignty and ManagementEthical ConsiderationsPolicy and Technology DevelopmentOutlookPodcast Outro
Please comment and ask questions:
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Production Team
Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk
Leon van Leeuwen: article-grade transcript editing
Oscar van Leeuwen: video editing
Julia Higgins: Digital marketing therapy
Steve Heatherington: Help Desk and podcast production counseling
Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection, including Moe's Blues for Proem and Reflection and Bill Evan's Time Remembered for on-mic clips.
Podcast episodes on YouTube from Podcast.
Inspired by and Grateful to
Kistein Monkhouse, Claire Sachs, Christine Von Raesfeld, Geri Lynn Baumblatt, Aaron Carroll, Erin Holve, Adam Thompson, Kathleen Noonan, Andrea Downing
Links and references
The Panel
Kistein Monkhouse, the moderator, founded Patient Orators. My peeps are Christine Von Raesfeld, founder of People with Empathy and with the Light Collective, and Claire Sachs, founder of the Patient Advocate Chronicles and TPAC Consulting.
A federated data model for patient data
PCORnet is a prime example of a federated data system. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8596061/
Episode
Proem
Kistein Monkhouse invited me to participate in a 30-minute panel at September’s Academy Health’s Datapalooza conference titled ‘Patient Insights on Health Access, Technology, and Public Policy.’ I thought, ‘OMG, this thesis-worthy topic can’t be addressed in 30 minutes.’ However, the opportunity begged to be embraced, especially with the citizen expert panel members: Kistein Monkhouse, the moderator, founded Patient Orators. My peeps are Christine Von Raesfeld, founder of People with Empathy and with the Light Collective, and Claire Sachs, founder of the Patient Advocate Chronicles and TPAC Consulting.