Insight to Impact: Patient Voices in Health Tech & Policy
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 Please comment and ask questions: at the comment section at the bottom of the show notes on LinkedIn via email YouTube channel DM on Instagram , Twitter , TikTok to @healthhats 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 . We had a blast preparing and presenting. Here goes. For readers, this newsletter was edited for readability. Podcast intro Welcome to Health Hats, the Podcast. I’m Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all of this. Level set – Get Your Patient On Kistein Monkhouse: Danny, as it relates to patients, their care partners, and clinicians, where do you see data playing a role in improving health access? Danny van Leeuwen/Health Hats: I want to do some level setting. We’re here about data. The fuller picture is that data leads to information, knowledge, and understanding, and then Lord helps us gain wisdom. Next, imagine yourself as a patient, whether you