On February 16, fourteen of the largest health systems in the country announced the formation of a company called Truveta. A Seattle start-up led by a former Microsoft executive, Truveta’s data platform will “help deliver personalized medicine, enable health equity, and empower the health community with insights on how to best treat patients,” according to their website.
At the heart of Truveta’s proposition is that there has not been enough data to statistically represent all patients, nor the technology to structure, normalize, and deidentify such data.
Truveta stresses ethics, shared purpose, empowering clinicians, guiding research, and saving lives as their reason for being and the collaboration of these health systems as a ground-breaking effort.
If you don’t feel a little circumspect after reading this litany of goodness, you should. Why? Let me count the ways:
Behind all the talk of ethics, shared purpose, pandemic preparedness, and the good of humanity, Truveta is in business to sell clinical data to whomever will pay the most for it (most likely big pharma). While there is no mention of this on the company's website, articles in the Wall Street Journal and Fierce Healthcare make this business proposition clear.
Further, there is nothing new about the Truveta collaboration and there is nothing inherently advantageous in bringing hundreds of hospitals together. We have Group Purchasing Organizations and industry associations pursuing their own patient data strategies. Rather, these collaborations represent new lines of business for their members who see a pretty bleak future in running hospitals and want to jump on the data bandwagon before new privacy and security regulations make these kinds of collaborations much more difficult, if not impossible.
In addition, health plans are the segment of the healthcare industry entrusted with managing clinical and administrative data for the consumer under the new rules. No provider, however large, has a complete picture of a patient’s health, and disregarding data collated at payers means important data is likely missing.
The industry is changing in other ways too. Ownership of patient data (in the property sense) is a thorny issue but control and stewardship are not. Patient control, or consent, to information sharing is central to the 21st Century Cures Act and the CMS and ONC Final Rules. Providers and payers are stewards of patient data and this rush to profit from the use of patient data is poor stewardship at best.
Further, in the near future, health data will reside on patients' digital devices upon their request. In this model, each patient acts as their own health information exchange delegating viewing and usage rights beyond those mandated by regulation to whomever they choose. This is the only truly effective approach to liberating data from the institutional silos that entrap them.
Truveta doesn't meet the moment in any way, and feels like a desperate grab for resources in a time when the industry is changing underneath providers looking for a way to navigate and survive in a new world they don't fully understand. While we welcome new and innovating ways to collaborate and share data, this effort is missing the mark.
Be safe, and stay well.
Denny Brennan, Executive Director
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MHDC and NEHEN Events
In addition, the next DGC Deep Dive on Telehealth is on April 1 from 2-3:30pm
Want to learn more about any of these meetings? Email firstname.lastname@example.org
Join us for our upcoming webinar:
Title: A Patient Safety Early Warning System: Getting the Complete Picture
Presenter: Robert Hanscom, Vice President of Risk Management and Analytics, Coverys
Date: March 11, 1:00 - 3:00 PM
For more information or to register visit our event page.
Title: The Accelerating Shift to Value Based Care
Presenter: David P. Terry, Co-founder, Chief Executive Officer, Archway Health
Date: March 18, 10:00am - 12:00 PM
For more information or to register visit our event page.
Title: Interoperability: Going Beyond Compliance A Consumer Centric Approach
Presenters: Tammy Graves, Healthcare Principal and Susan Yeazel, Healthcare Customer Director of Point B
Date: March 18, 11:00am - 1:00 PM
For more information or to register visit our event page.
Did you miss our last webinar "Tackling the Operational and Cultural Challenges of the Information Blocking Rule" by Adam Greene, Partner at Davis Wright Tremaine, LLC. To learn more or to listen to our recording visit our content page.
Interested in participating in our webinar programming? Contact us at email@example.com
The Data Governance Collaborative (DGC) at MHDC is a collection of payers and providers throughout the commonwealth exploring ways to better exchange health-related data incorporating industry standards and automation as much as possible.
The DGC has selected a preferred vendor for the code mapping system we plan to stand up later this year. We continue to make progress toward signing contracts and believe we will move to the implementation phase soon. This system will be available to anyone (with a discounted rate for DGC members).
The first DGC deep dive was a big success. Held on February 3, we discussed quite a few interesting use cases around how diagnoses are made and stored. We came up with some guidelines on what constitutes a diagnosis and identified challenges in exchanging diagnosis information. Thank you to all of our participants for such a great session.
The next deep dive will cover telehealth on April 1 from 2-3:30pm. We are encouraging members to bring guests with relevant experience and knowledge; we would like to extend the same invitation to MHDC membership at large - if you're an expert on the different ways information about telehealth is captured, how data from telehealth visits is entered into EMRs, or how telehealth data is used and you are interested in participating please email firstname.lastname@example.org for details.
We are still working on getting signed agreements in place for the electronic prior authorization (ePA) project. Once we do we'll announce the participants. We plan to keep everyone updated on the process so watch this space!
Membership in the DGC is open to any payer or provider with business in Massachusetts - big or small, general or specialist, traditional or alternative. Want to know more? Email email@example.com
Spotlight Analytics Update
We have received the CHIA Emergency FY19 data and are in the process of loading it into Spotlight. We will send out an update notification once this data is loaded and ready for use.
We are also finalizing enhancements and additions to Spotlight Business Analytics such as the new dashboard layout and incorporating new data sources. For more information on these updates please feel free to reach out to us at firstname.lastname@example.org.
Our current status is:
Loaded and available for use:
Received and in progress:
Expected very soon:
Future planned data:
Please feel free to drop us a line with any questions or comments at email@example.com. In the meantime, thank you for being a Spotlight Analytics user and a member of this community! Feel free to visit our Spotlight Business Analytics page or email us at the address above for more information.
Not currently using Spotlight Business Analytics? Visit the Spotlight Business Analytics page to find out how it can help your organization run custom analytics on health data such as analyses of market share, patient origin, disease prevalence, cost of care, and comparative costs and outcomes for every acute care hospital in Massachusetts and Rhode Island (and soon to include New Hampshire and Maine!).
Interested in webinars and online conferences through March? Here are some we recommend (they're free unless otherwise noted):
Have an upcoming event next month to suggest? Write us at firstname.lastname@example.org - no self-promotion please.
FHIR Accelerators Overview
Official HL7 FHIR accelerators (also sometimes called FHIR incubators) are "designed to assist communities and collaborative groups across the global health care spectrum in the creation and adoption of high quality FHIR Implementation Guides or other standard artifacts to move toward the realization of global health data interoperability."
Each FHIR incubator or accelerator focuses on a specific area or type of healthcare need, defining standardized uses cases, workflows, and exchange data within that area. They are independent member organizations open to public participation; membership provides additional engagement opportunities and input into the work taken up by each group.
How FHIR Accelerators Work
The official FHIR accelerators include:
The Da Vinci Project spans a wide breadth of healthcare use cases focused on value based care. It convenes approximately ten work groups focused on specific topics called use cases (they each encompass multiple related use cases in the traditional sense of the term). These use cases cover most of the recent CMS interoperability rules; CMS guidance has indicated that following certain Da Vinci Implementation Guides are acceptable for meeting specific regulatory requirements and the prior authorization rules currently on hold follow the Da Vinci prior authorization workflows. Da Vinci has a monthly public community meeting highlighting the state of their work either through demos from organizations starting to adopt Da Vinci Implementation Guides or, periodically, by providing updates on current and upcoming work. They also participate in various HL7 events like FHIR Connectathons to encourage more hands-on collaboration and education.
The Argonaut Project was the first FHIR accelerator. It focuses on EHR and core clinical data exchange. Bulk FHIR is managed by Argonaut, and they have also done work related to both SMART on FHIR and CDS Hooks. The project is not updated as often as most of the other accelerators and it is not clear how much active work is still ongoing; the last published working documents are from November 2020 and the last published meetings were in January 2021. Their Wiki is not heavily used and hasn't been touched since August 2020.Vulcan focuses on clinical research and connecting clinical research to clinical care. Vulcan is currently working on three projects: Phenopackets, Real World Data, and Schedule of Activities. The Phenopackets project works on exchanging phenotype data to support de-identified exchange of patient data for wide research distribution. The Real World Data project works on populating research databases directly from the EMR for enrolled patients. The Schedule of Activities project is defining a FHIR-based representation of a typical schedule of activities used to oversee clinical trials to improve standardization and ease of management. Unlike most accelerators, Vulcan does not publish activities or status publicly; interested parties must register to learn more about the group.
Gravity Project focuses on social determinants of health (SDOH). They identify structured data elements, particularly coded elements and their associated values, that represent SDOH data within EMRs and existing gaps therein. They focus on three social risk domains (food insecurity, housing instability, and transportation access) across four clinical activities (screening, diagnosis, planning, and interventions). They meet as a single group for 90 minutes every two weeks; each meeting is focused on a specific topic advertised in advance. In addition, a group working specifically on FHIR implementation guides meets every Wednesday from 3-4pm.CodeX focuses on cancer care and related research. It aims to remove barriers to learning from all cancer patients, both in and out of clinical trials, by improving data standardization and building use cases on top of the minimal Common Oncology Data Elements (mCODE) standard. Its current focuses include matching patients to clinical trials, radiation therapy treatment capture, prior authorization for cancer care, and more. CodeX has just started working on genomics and family history data capture and exchange, an important area for cancer that comes with many data and privacy challenges. CodeX has a monthly public meeting; additional participation requires signing up with the group.
MHDC and the FHIR Accelerators
MHDC works most closely with the Da Vinci project, primarily via the work of the Data Governance Collaborative. We attend some of the regular meetings, particularly in the areas of prior authorization and payer data exchange (which covers much of the May 2020 CMS rule), attend most of their public webinars and meetings, and periodically discuss the state of the world and work by both organizations with their program manager Jocelyn Keegan (who is based here in Massachusetts).
MHDC has attended webinars and conferences with each of the accelerators and has seen presentations about their core missions and some of their specific work output. We also periodically attend their public meetings and are starting to talk to some of these other accelerators about collaboration opportunities.
We believe that any and all work on standardizing data and data exchange is worthwhile. MHDC and the DGC will continue to monitor and, with varying degrees, interact with these FHIR accelerators. We encourage you to do the same.
Women's History Month
Women's History Month is a celebration and acknowledgement honoring the many achievements and contributions that have helped shape our history, society and our culture by women. Women have made immense contributions in the healthcare and technology arenas; to learn more about their current and historical impact, check out some of these links:
Red Hat Coffee Hour (encouraging girls to code): Mar 9, 2-3pm
In Dialogue: Smithsonian Objects and Social Justice: Mar 11, 5-6pm
Aletha Maybank, MD, MPH, discusses gender equity issues in health care (previously recorded)