This past week, CareSet attended the 10th Annual Health Datapalooza, brought to you by Academy Health. Originally from the mind of Todd Park, Data Jedi, the world of health data is seeking to change the game. Healthcare should be people-centric. Data has the power to get there. Read some highlights from the conference.
CareSet’s CTO, Fred Trotter, gave two data tutorials the day before the conference. The first course covered NPIs and NPPES. A classroom filled with eager learners, Fred kept the audience engaged throughout the several-hour course. A fun fact most were surprised to find out, NPPES was not always NPPES. It was case-sensitive previously, much to Fred’s chagrin.
The second course was on the DocGraph. It was the release of the DocGraph dataset that helped Fred receive the Data Liberator Award at Health Datapalooza in 2016.
What’s a healthcare conference without the famous Pink Socks tribe? Pink socks friends gathered at Madam’s Organ for fellowship and libations. If you do not know anything about #pinksocks, you should do a quick Twitter search.
— Nick Adkins (@nickisnpdx) March 27, 2019
Health Datapalooza Morning Day One
Speaking of Pink Socks, the morning of day one began with Nick Adkins on stage, asking the audience to find someone next to them, look them in the eye, and say, “I see you.”
Have you ever done that with a stranger? It’s both terrifying and calming at the same time. After the initial awkwardness wears off, you feel at ease. You begin to smile. You make that human connection.
The rest of the introduction to the conference was great as well. Senator Ron Wyden of Oregon gave his thoughts on the healthcare system: data privacy for the people, and data/price transparency from the system. You can read more from Medpage Today.
Discovering Public CMS and FDA Data
Moderator: Mona Siddiqui, HHS
Panelists: Ha Abrams, CMS; Paul Howard, FDA; Kayenda Johnson, CMS; Sean Khozin, FDA
Special guest: Allison Oelschlaeger, CMS
- Transparency is a priority for the FDA
- The OPEN Act can only lead to good things
- The audience was asking good, pointed questions leading to the continuation of great discussions
Health Datapalooza Afternoon Day One
Nothing About Us Without Us: Toward Collective Self-Governance of Patient Support Groups’ Data on Social Media
Panelists: Casey Quinlan, Mighty Casey Media; Andrea Downing, Brave Bosom; Fred Trotter, Careset Systems; Deven McGraw, JD, MPH, LLM; Jill Holdren, BRCA Commons
After a long and strenuous road, a group of dedicated individuals filed an FTC complaint against Facebook. You can read the nitty-gritty details at missingconsent.org
During this session, the group gave a background of how things escalated, and what they’ve been trying to do since.
- Even “private” Facebook groups are vulnerable
- It’s not that easy to migrate away from the social platform. A lot of time and effort goes into figuring out where to go next
- You can download everything Facebook has on you
- Calls-to-Action: Find a way to download a secure backup of support groups; find name/location privacy for health groups; and respect settings
Place Matters: Innovative Social Determinants of Health Data and Resource Mapping
Moderator: Brian Castrucci, de Beaumont Foundation
Panelists: Marc Gourevitch, NYU Langone Health; Rodney Harrell, AARP; Angela Hagan, Humana
Each of the speakers got up and demonstrated the cool tools available for people to use. They all show data at a local level.
- zoom in by Humana identifies health risks and social determinants using data visualization
- Livability Index by AARP scores the livability of your community based on numerous categories ranging from housing options to air quality
- City Health Dashboard by NYU Langone Health in partnership with the Robert Wood Johnson Foundation offers data for the 500 largest cities in the U.S. so that communities can address challenges
Health Datpalooza Morning Two
Some members of CareSet, along with roughly 20 other people braved the cold and the morning to run. In part by Sitka, Inc, a fun run to the zoo and back.
The morning session was boisterous. From Todd Park batting a lightsaber, all the way to Bob Kurghoff wearing the Jedi robe like he already had one, International Ballroom was the place to be.
Next, there were several key speakers. They all were saying the right things. A few tweets say it best:
Panel summary: Time to move from “information liberacion” to “information distillation”?! @Todd_Park44
— Lygeia Ricciardi (@Lygeia) March 28, 2019
— Health Datapalooza (@hdpalooza) March 28, 2019
We at @mpiricahealth are thankful for Robert Krughoff's work in helping shake loose data that makes what we do possible. Congratulations on the award (and thanks to others at #HDpalooza who liberate data)! @N_Brennan @fredtrotter @charlesornstein etc. https://t.co/H3fv94MVxt
— Chris Diede (@ChrisDiede) March 28, 2019
…And lest we forget,
A CHANCE TO WIN $1 MILLION.
Adam Boehler of CMS announced a challenge – create a solution to predict health outcomes. Second prize is $250k.
From the website, “Participants will analyze large health care data sets and develop proposals, AI-driven models, and frameworks that accurately predict unplanned hospital and SNF admissions and adverse events.”
Integrating Social Determinants in Clinical Settings: Not Just the Right Thing to Do, but Real ROI with Multi-Sector Collaboration
Moderator: Amy Vreeland
Panelists: Martin Love, North Coast Health Improvement and Information Network; Michael Rohwer, Curandi; Ken Shapiro, County of Marin, HHS
Ken Shapiro started off the session. He mentioned the concept of providing housing for those experiencing chronic homelessness. He said that once people are housed, then they can be engaged in the health system.
Martin Love talked about trust and relationships – they’re fundamental. And he talked about HMIS and hospitals being monitored constantly, keeping the lines of communication open on both sides.
Michael Rohwer had a great line, “When we change the way we look at the issues, the issues change.” He mentioned that the core need is ‘connection’.
- Marin County is currently projected to end homelessness by 2022
- Social care and human services are not medical care, and should not be treated as though they are
- Use variation to solve problems. Align outcomes. Decouple process
HDP Afternoon Two
Unconference – Project Lighthouse: Governance, Rights, Consent, Identity, for Peer-to-Peer Support Groups on Social Media
- Patient and non-patient communities alike need to band together for change around privacy and safety online
- Several suggested pillars for online support communities: good governance, fair partnerships, good moderation, “no technology about us without us”
When Disaster Strikes: Health Information Exchanges Fill in Patient Data Gaps
Moderator: Kelly Thompson
Panelists: Tara Cramer, Georgia Regional Academic Community Health Information Exchange (GRAChIE); Elizabeth Steffen, SacValley MedShare
- A longitudinal view of a patient at the point of care can make things better
- Health information exchange connections in preparation for natural disasters should be a priority
CareSet announced the release of the 2017 Hop Teaming Dataset at Datapalooza.
Health Datpalooza 2019 was unforgettable. Academy Health puts on a great conference. It was filled with a diverse group of healthcare industry shakers and movers. A lot of groundwork has been laid down, and now it’s time to continue the good fight. As more data becomes readily available, it is our responsibility to utilize it for the common good. We must continue to push for open data, and simultaneously, protect our privacy rights. We must hold the government to a high standard, and using our experience, help them as they explore new territory when it comes to data.