Stream: patient empowerment
Topic: ONC2020
John Moehrke (Jan 27 2020 at 19:03):
Nice call out by @Debi Willis from the big stage at ONC Annual event for the Patient Empowerment workgroup!!!!
Dave deBronkart (Jan 27 2020 at 23:00):
Wish I coulda been there - glad she was!
What's on the agenda for Tuesday?
Bart Carlson (Jan 28 2020 at 01:08):
Here's the agenda for Tuesday:
Time / Session
7:30-8:30 Registration – Grand Foyer
8:30-9:30 Morning Breakout Sessions I
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Leveraging Technology to Address the Opioid Epidemic
This session will talk about successes and challenges leveraging technology for interventions in treating and prevention of Substance Use Disorders (SUD), Serious Persistent Mental Illness (SPMI), or Neonatal Abstinence Syndrome (NAS). We will discuss state efforts implementing substance use disorders (SUD)/opioid use disorder (OUD) health IT plans that are included as part of Medicaid 1115(a) demonstration waivers. Examples of topics covered include prescription drug monitoring program (PDMP) interoperability, the role of electronic prescriptions for controlled substances (EPCS), provider directors, consent, and data analytics and dashboards. The session will then discuss the requirements for state health IT plans required in section 1115(a) Medicaid demonstrations addressing serious persistent mental illness (SPMI)/serious emotional disturbance (SED). Health information exchange and interoperability considerations addressing behavioral health-physical health integration, care plan sharing, care plan coordination, provider directory, and identity management will be explored in this session. -
Maximizing the Use of Prescription Drug Monitoring Programs
This session will provide an overview of the CDC's partnership with states and promising state strategies to help prescription drug overdose. This session will also outline ONC and CDC's collaboration project to advance EHR and PDMP integration as well as highlight findings from ONC's state PDMP policy analysis. -
FHIR®: Advancing Interoperability Standards in the API Economy
Healthcare is looking to FHIR® (Fast Healthcare Interoperability Resources), the next-generation standards framework by HL7, to help usher in a new age of interoperability. FHIR® has the potential to both support new innovative, data driven applications while also enabling interoperability between legacy health care systems. In support nationwide interoperability goals, ONC has recently signed a cooperative agreement with IHE USA to accelerate the adoption of the FHIR® specification and advance standardization through profiling and real world testing. This agreement will strengthen collaborative efforts between IHE and HL7 and drive the development of new and updated IHE Technical Profiles to support the adoption of FHIR® and the healthcare API economy. Join a moderated dialogue between subject matter experts from ONC, IHE, HL7, and others and how this collaborative project will impact real world applications and the future interoperability landscape. -
Advancing API and FHIR® in Health IT: Key Industry Efforts to Spread API and FHIR® Adoption Through a Collaborative Approach
Collaborative efforts are coming together to leverage the power of APIs and the HL7 FHIR standard, taking the industry one step closer to improved digital data access and exchange. Carequality, Argonaut, and Da Vinci individually are working towards proposing approaches to address the future of digital data access and exchange in specific domains towards goals such as reducing provider and administrative burden with health IT, and empowering the patient. Meanwhile, the FAST Initiative is working to confront the infrastructural challenges holding back the deployment and adoption of these individual solutions at scale -
The 21st Century Cures Act and Clinician Burden Reduction: Update
Section 4001(a) of the 21st Century Cures Act mandates that ONC set a goal to reduce regulatory and administrative clinician burdens and deliver a report to Congress containing strategies and recommendations to meet that goal. In this session, ONC’s Chief Clinical Officer will update participants on the status of the final report Strategy on Reducing Regulatory and Administrative Burden Relating to the Use of Health IT and EHRs. The update will walk participants through our partnership with CMS on this initiative consisting of joint public listening sessions. How public comments informed the report’s first draft; review of the report by four ONC workgroups; and a status of the clearance process and projected report release date. This session goes hand-in-hand with the panel discussion devoted to exploring potential solutions of the measurement of clinician burden through survey data and audit log data. -
Various “Flavors” of Health Information Networks and their Role in Enabling Interoperability
This session will highlight various types of networks that will likely participate in the TEFCA and the role they currently play in enabling interoperability. Discussion will include how the role of these different types or “flavors” will evolve with the implementation of the TEFCA, and how measurement will be important to assess progress over time. RTI will provide an overview of measurement as part of the TEFCA and RCE responsibilities related to this. ONC will provide insights into hospital participation and use of networks (both local, regional and state, as well as national networks) to enable interoperability. Julia Adler-Milstein from UCSF will highlight key findings from a national survey of state, local and regional HIOs regarding their role in enabling interoperability and their perspectives related to the TEFCA -
HHS and Related Efforts to Advance Social Determinants of Health Interoperability
The ability to capture, use, and exchange many aspects of electronic health information has greatly advanced with the increased adoption of health information technology (health IT). The availability of interoperable social determinants of health (SDOH) data, however, remains limited across much of healthcare. HHS agencies support the development and use of SDOH data, increasingly through the use of health information technology. ONC works to advance the use of health IT enabled SDOH data through its certification program, available standards, and active policy coordination. -
State of Interoperability, Barriers, and Benefits
As ONC begins implementing key provisions of the 21st Century Cures Act, it is important to characterize the current state of interoperability. The 21st Century Cures Act calls specifically to address key challengers to interoperability such as information blocking and burdensome use of multiple methods of exchange. This session will discuss the state of interoperability and barriers faced among nonfederal acute care hospitals. The session will also present the work illustrating how EHRs interconnectivity hinders hospitals’ referrals. Finally, the session will feature presentation related to quantifying the benefits of interoperability.
9:30-10:00 Networking Break
10:00-11:30 Morning Plenary Sessions
10:00-10:30 Welcome and Morning Keynote
10:30-11:30 Balancing Patient Privacy with Data Access: Lessons from the Field
- Cynthia Fisher, Founder, Chairman, PatientRightsAdvocate.org; Founder and Former CEO, ViaCord, Inc.
- Deven McGraw, Chief Regulatory Officer, Ciitizen
- Morgan Reed, President, The App Association
The use of secure, standards-based APIs will create new, exciting opportunities for patients and providers alike to share their data to improve their health. On this International #DataPrivacyDay, join a group of technologists, privacy experts, and patients for a robust discussion on balancing privacy with the expanding flow of health information.
continued...
Bart Carlson (Jan 28 2020 at 01:09):
11:40-12:30 Morning Breakout Sessions II
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FHIR® and Public Health, Current Activities, Plans, and Future Possibilities
The collection of data by public health authorities is fundamental to the practice of public health. The data come from many sources clinical encounters, laboratory results, environmental sampling, reports of births and deaths. This session will briefly focus on the history of public health data collection, the breadth of data points that are collected today, existing standards in use, the feedback loop of data collection/analysis/interpretation/policy development, and take a deep dive into what can be expected as Health IT moves towards FHIR based IT solutions. -
Leading Edge Acceleration Projects in Health IT Programs
In 2018, ONC published the Leading Edge Acceleration Projects (LEAP) in Health IT funding opportunity to further a new generation of health IT development and inform the innovative implementation and refinement of standards, methods, and techniques for overcoming major barriers and challenges in the field. This panel presents in detail the focus of LEAP and the ongoing work of the four currently funded projects; two from FY18 and two from FY19. Key aspects of these projects focus on reduction provider and health system burden of utilizing health IT, while incorporating data access and use via an API for innovative purposes. Panelists will leave time for discussion around the development, implementation, and use of their respective solution, as well as early legal and policy implications. This panel aims to stimulate a highly interactive discussion and strengthen the community’s knowledge of innovative uses of health IT, barriers and solutions for use, and areas ripe for future work. -
Developing a Blueprint for Electronic Clinical Quality Measure Reporting
As healthcare costs continue to rise and the health status of Americans continues to languish, new approaches to healthcare delivery and payment are being sought. With the recognition that what cannot be measured cannot be fixed, focus must be placed on establishing a highly functional, methodologically sound, minimally burdensome, and broadly trusted system of measuring quality and outcomes in healthcare. NCQA has assembled a set of core principles for quality measurement, to be considered when choosing existing or creating new measures, when developing programs for payment and improvement, and for measuring our progress as a nation as we seek to implement a better framework for measurement. -
FHIR® Testing with Inferno
Review the latest updates to ONC’s FHIR (Fast Health Interoperability Resources) testing sandbox, Inferno. The session provides a review of the Inferno Program Edition (PE); however, putting more focus on the latest updates to the Inferno Community Edition (CE). -
Assistive Technology Leadership Expert Panel: Where are We and Where are We Going?
This session will discuss the role that AT can play in lives of older adults, individuals with disabilities and their caregivers. Assistive technology is capturing health information and needs be interoperable with the rest of the health IT ecosystem. This session will review the following four goals:
o Identifying ways to increase access and awareness of assistive technology
o Interoperability considerations for data being captured by assistive technology and its use throughout the health IT ecosystem including in EHRs and for clinical decision support
o Federal approaches to develop a consolidated directory of assistive technology that individuals can accesses. This directory will provide supports and services needed for activities of daily living (ADLs) and independent activities of daily living (IADLs)
o Look at the current state of assistive technology and where assistive technology is going over the next 10 years from neocortical implants, to biometric devices, and robotics -
The New Roaring 20’s: Discussing the Federal Role in Advancing Health IT
Please join us as select federal partners spotlight factors influencing the development of the Federal Health IT Strategic Plan and highlight key initiatives underway to advance interoperability and modernize our nation’s healthcare system. Our panelists will discuss the government’s vision around using health information and technology to promote health and wellness, improve care delivery, and accelerate research developments. -
Prior Authorization: A Public and Private Sector Update
Prior authorization continues to be a source of tremendous burden for the medical profession, frustrating doctors and moving patient care away from the center. This session will examine public and private sector efforts in 2019 to solve this vexing problem, starting with looking at the current prior authorization landscape focusing on the current challenges and solutions. Standards development organizations (SDOs) and other industry experts will provide updates on the latest work to automate prior authorization leveraging modern standards to support the clinical workflow. The session will include an update on prior authorization use cases from HL7’s Da Vinci Project. Lastly, presenters will discuss next steps and solutions to the prior authorization problem. -
Clinical Response through Emerging Technologies (CRET)—Using Health Information Technology to Respond to Public Health Hazards
The Clinical Response through Emerging Technology (CRET) is a U.S. Department of Health and Human Services (HHS) initiative created to improve the clinician’s response to emerging public health hazards using existing electronic health records (EHRs) and other information technology (IT) tools and infrastructure. CRET’s goal is to provide clinicians with near-real-time updates to information and best practices to improve their medical response to a broad range of natural and manmade hazards. This presentation will build upon previous CRET work and share examples of how it can be used. It will also engage the audience, using a smart phone technology, to generate broad stakeholder input on topics such as, but not limited to: capturing risk exposure, accessing existing data to assess a patient’s risk—without additional clinician burden, and evaluating the level of detail a local clinical site needs to implement CRET.
12:30-1:45 Lunch
A list of area restaurants is available in the registration area; please ask event staff for assistance.
1:45-3:30 Afternoon Plenary Sessions
1:45-2:45 Merging Clinical and Financial Standards: the Shift to Value and Transparency
- Jim Parker (moderator), Senior Advisor to the Secretary for Health Reform, HHS
- William W. Stead, MD, Chair, National Committee of Vital and Health Statistics and Chief Strategy Officer & McKesson Foundation Professor of Biomedical Informatics & Medicine, Vanderbilt University Medical Center
- Stephen T. Parente, Ph.D., Minnesota Insurance Industry Chair of Health Finance and Professor, University of Minnesota; Senior Economist, Council of Economic Advisers, The White House
- Anita Samarth, CEO, GovHealth
In our everyday lives we make purchase decisions based on price and product or service. Yet in healthcare, financial and clinical data remain disconnected. Hear from policy and tech experts to discuss the ways that modern technology and the FHIR® standards can solve this challenge.
2:45-3:30 Congressional Roundtable: Perspectives from Capitol Hill
- Traci Vitek (moderator), Deputy Assistant Secretary for Legislation, Human Services, HHS
- Colin Goldfinch, Senate HELP Committee
- Aliza Silver, Senate HELP Committee
- Samantha Satchell, House Energy and Commerce Committee
- James Paluskiewicz, House Energy and Commerce Committee
Hear from a bi-partisan panel of congressional staff who work on healthcare and health IT issues daily, including the landmark 21st Century Cures Act.
3:30 Meeting Closes
John Moehrke (Jan 29 2020 at 14:29):
The event was EXCELLENT from a Patient Empowerment perspective. There was still many pushing back on open access, trying to protect the patient from themselves. That said, I think the overall message is that the patient has right-of-access, and must be trusted. Good discussion around delegation for the various situations where a substitute decision maker is needed. lots of good productive discussion.
Dave deBronkart (Jan 29 2020 at 14:39):
A new star emerged as a patient voice, Grace Cordovano. She's well known on Twitter but not in DC circles, but I imagine that's ended: she was powerful and articulate about the pragmatic problems she faces from lack of interoperability, in her work as a "board certified patient advocate" (who knew there was such a thing??). She described having to drive to another state to get copies of records face to face, or get tissue samples to expedite qualifying for a clinical trial, etc.
There was also a shout-out from the main stage for 21-year-old Morgan Gleason's patient/caregiver letter, which includes numerous stories of patient impact good or bad. It continues to get signatures - over 100 so far.
Lloyd McKenzie (Jan 29 2020 at 16:15):
I think the message that "patients must be trusted" isn't the right one. We can't trust that patients will make the right decisions with their data - any more than we expect them to make the right decisions with their data in any other aspect of their life. Thousands, will doubtless do things with their data that has negative ramifications for themselves or for others. People share sensitive information about themselves (and sometimes non-consenting family and friends) with the public and/or untrustworthy apps all the time. There is zero doubt that harm will come from allowing information to flow more freely.
The key message needs to focus on the "rights" piece. Patients have the right to access the data, whether they do dumb things with it, figure out how to save their own lives, just make their day health struggles a bit more manageable, or perhaps a mix of all of those things. There can be real-life ramifications to sharing the wrong data with the wrong people. We don't keep teenagers from having access to phones because they might sext (or at least that decision is left up to parents/guardians). We don't restrict Facebook access even though someone might post about their brother's bipolar or mother's drinking. And we don't prevent people from wasting countless hours of previously productive time downloading and playing games on their phones.
We don't prevent those things because there are both individual and societal benefits to texting, apps on your phone and (perhaps?) even Facebook. Instead, we provide education through schools and the media on appropriate use. And we impose real-world ramifications such as lawsuits or even jail time on particularly bad behavior. The ability for health information to flow more freely to - or through - patients has clear benefits for patient care, reduction in duplicate or inappropriate therapy, quicker/more accurate diagnoses, better treatment and just patient piece of mind. For society, all of the prior benefits lead towards reduced costs for insurance, reduced costs for research, improved cost transparency, etc.
For patients who have limited/no capacity to make appropriate decisions, there are legal options to delegate their rights to others. However, if a patient is considered capable of signing a consent form for life-altering surgery, we can't then declare they're incapable of deciding who to share their healthcare data with. Even if we did want to protect some patients from themselves, it doesn't make sense for the gatekeepers performing that 'protection' to be those with a vested interest in keeping data private - be it to hide the inevitable errors, reduce competition, prevent price transparency, etc.
Countries that do not yet have appropriate privacy legislation will doubtless need some. But we can't afford to wait for perfect privacy legislation to allow patients to have their data. Frankly, the opposition to appropriate privacy rules in the U.S. are so high, it's probably only the risk (or fact) of inappropriate use of health information that will be able to result in the enactment of that legislation.
John Moehrke (Jan 29 2020 at 16:51):
Yes, that is indeed the message. I am not sure I understand why this is a counter argument to "we must trust the patient"? The trust statement is a statement indicating the patient has agency and doesn't need someone second guessing them. So I must be not seeing a specific point you have against the word "trust"?
Lloyd McKenzie (Jan 29 2020 at 17:33):
"We must trust the patient" can be met with legitimate responses of "but I don't trust the patient". My point is that whether you trust the patient or not is irrelevant. They have the right to the data and you must share it with them even if you know that some percentage of them will do things with it that may cause themselves or others grief.
John Moehrke (Jan 29 2020 at 17:43):
okay
Dave deBronkart (Jan 29 2020 at 17:46):
(deleted)
Dave deBronkart (Jan 29 2020 at 17:46):
(deleted)
Dave deBronkart (Jan 29 2020 at 17:52):
The key message needs to focus on the "rights" piece. Patients have the right to access the data, whether they do dumb things with it, figure out how to save their own lives, just make their day health struggles a bit more manageable, or perhaps a mix of all of those things.
Precisely, IMO. See "Doc John" Grohol's post yesterday on the SPM blog about Epic's home-page message, which is a pure example of paternalism: "No no, you don't know what you're doing! You'll hurt yourself! I'll decide for you."
The transition from paternal caring to autonomy is the underlying issue in all such discussions, from letting little kids dress themselves to letting them drive to letting them marry, vote, etc. There's no escaping it, and IMO it's not a problem. It's just a natural social evolution.
Conversely, there are many stories of preventable harm in the patient/caregiver letter due to FAILED access, posted Sunday night on SPM.
Jose Costa Teixeira (Jan 29 2020 at 17:53):
@Dave deBronkart refresh your zulip. Those were in response to Lloyd's comments which were extensive
Dave deBronkart (Jan 29 2020 at 17:54):
fixed thx
Grahame Grieve (Jan 29 2020 at 20:53):
I strongly feel that there needs to be some equivalent to HIPAA for applications that get access to patient data.
Epic commented on one acute problem: people's medical records contain data about other people, not just them. There's some real potential for abuse here. (Facebook already showed how effective this is: https://gizmodo.com/people-you-may-know-a-controversial-facebook-features-1827981959). I completely agreed with Epic about the problem on this.
What I was surprised that no one raised (not that I saw) is an equally obvious corollary: it's an excellent way to build survelliance systems on the care providers too.
I think that HL7 should have an official position that we endorse patient access to data, but we strongly believe that the data should have strong legal protections to protect the privacy of other people that are referred to in the patient's data
Bart Carlson (Jan 30 2020 at 00:50):
Based on my understanding of a presentation at the ONC Annual Meeting in Washington, D.C. earlier this week, it is my understanding that once the patient obtains a copy of their clinical records from a HIPAA Covered Entity (e.g. CE) via a patient App or other patient enabled enterprise system (e.g. System), then the App/System that enabled the records transfer and the clinical data in the App/System are immediately covered by the rules of the FTC and no longer covered by HIPAA.
Furthermore, if the App/System presented their respective rules of use to the patient and the patient accepted their rules as a condition of use of the respective App/System, then those are the rules that would then govern the patients clinical data that were extracted by the respective App/System going forward. However, if the App/System didn't present their rules and get the patients approval prior to use of the App/System, then the FTC rules in general would be applicable for the specific clinical data extracted by the respective App/System going forward.
Abbie Watson (Jan 30 2020 at 02:04):
That's my understanding of how things currently play out also. FTC and FCC both. Phone tapping is still illegal under the FCC, and jailbreaking an encrypted operating system can still void warranties per the FTC, etc. So it's not like there are no protections.
Vassil Peytchev (Jan 30 2020 at 04:58):
One of the points made at the ONC meeting (by a proponent of the App Economy(tm)) was that the FTC has no budget or provisions to enforce any privacy rules, as weak as they may be. His solution was to give the FTC a budget for enforcement.
Brendan Keeler (Jan 30 2020 at 05:17):
It's not like HIPAA abuses have been regularly enforced either
Ryan Howells (Feb 03 2020 at 19:03):
I think that HL7 should have an official position that we endorse patient access to data, but we strongly believe that the data should have strong legal protections to protect the privacy of other people that are referred to in the patient's data
@Grahame Grieve I would encourage folks to read our carinalliance.com code of conduct (https://www.carinalliance.com/wp-content/uploads/2019/05/2019_CARIN_Code_of_Conduct_05082019.pdf) to learn more about how the FTC enforces industry-agreed upon codes under their regulatory authority (Section 5a of the FTC Act). It's the reason we developed the code of conduct in the first place to ensure we can 'raise the bar' in terms of protecting the data outside of HIPAA.
For example, there are multiple areas of our code which go above and beyond HIPAA including getting upfront, informed, proactive consent from the person to share their data, restricting secondary uses of data, and applying the same principles to both identified and deidentified data.
While we don't yet have a national privacy standard (and may not for some time), the private sector can help advance the privacy and security of data NOW based on best practices AND the individual preferences of the patient while still sharing data with the patient's preferred application. We believe in privacy AND access. Those two things are not mutually exclusive.
Jose Costa Teixeira (Feb 03 2020 at 19:32):
I am interested in knowing how can we reinforce our interoperability systems (incl FHIR) so that we have those protections and rights built in our systems.
More than having a position, HL7 should enable technical solution e.g. for one of the problems: These regulations, contracts, etc are not embedded in the systems (afaik). Controls are insufficient and rely on human review
Ryan Howells (Feb 25 2020 at 22:42):
That would be great although the proposed rules say 'any application' can connect whether they have the technical solutions in place or not. Regardless, I would 100% agree it would be great to build out the technical solutions necessary to protect the data.
Given the regulatory environment we currently live in (at least here in the US), there is always going to be a mandatory path related to compliance (HIPAA, national consumer privacy standard, etc.) and a voluntary path (contract law, RCE, TEFCA, etc.). We need to ensure the data is protected regardless of where it sits (mandatory or voluntary) and provides a similar experience for the end user. Personally, I believe the voluntary path (which includes the technical protections you are alluding to @Jose Costa Teixeira) should meaningfully advance the privacy, security, and consent standards to ultimately help raise the regulatory/policy bar in the future.
Last updated: Apr 12 2022 at 19:14 UTC
