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CHHS Data Exchange Framework Stakeholder Advisory Group Meeting - Shared screen with speaker view
Emma P., Manatt Events
40:29
The program will begin shortly.
Kevin McAvey
42:47
Information on future Data Exchange Framework Stakeholder Advisory Group meetings will be available at https://www.chhs.ca.gov/data-exchange-framework/
Kevin McAvey
44:05
CDII@chhs.ca.gov
Kevin McAvey
54:03
To join our mailing list for updates on Data Exchange Framework development, please email your interest to CDII@chhs.ca.gov
Jamie Almanza (Bay Area Community Svcs)
59:36
I am also representing behavioral health and housing and homelessness as a direct service provider (Bay Area Community Services)
Kevin McAvey
01:06:22
Thank you all for your comments. Please continue to share your comments in the Q&A throughout today's meeting - we will review all.
Paul Markovich
01:16:30
I would like us to add the word "usable" in front of electronic information on the mission statement. A big problem today is that information is being exchanged but cannot be used by the receiver. If we are going to fulfill the vision, the data must be exchanged and used effectively. Thanks.
David Ford (CMA, he/his/dude)
01:28:01
@Paul - Great Call Out
Michelle Cabrera, CBHDA (she/her)
01:33:40
I also want to call out the notion that tracking needs to happen across payers/for uninsured populations as well. I believe part of the intent is to be able to look across payers and time eventually.
Jonah Frohlich (he/him)
01:34:00
good suggestion re: language changes. Welcome comments about how that language should be amended
Linnea Koopmans - LHPC (she/her)
01:34:24
I'd recommend we specifically call out behavioral health. Obtaining behavioral health data for purposes of clinical coordination and service delivery has been a longstanding challenge, so it’s important to be explicit about the fact that "health" includes both medical and behavioral health data. Thank you.
DeeAnne McCallin (CPCA)
01:34:50
CPCA embraces Dr. Steven Lane's comments advocating national standards, USCDI. A best path to "usable" or "the what" data.
Cathy Senderling-McDonald (CWDA, she/her)
01:36:47
Hi all, I wanted to also thank the Agency for bringing us all together. We have so much information individually, that using that collectively offers so much promise. I agree with and echo the comments regarding equity, as well as the comments Michelle Gibbons made regarding looking at the more macro-level opportunities we have to use these data, not just the micro-level, individual aspects - both are important! Additionally, I would suggest that we ensure we are thinking about *how* practitioners and individuals might use the data - for example, the possibilities are significant and some training and education could be helpful for, say, an individual doctor or practice to understand the link between access to social services benefits like CalFresh to the individuals' health outcomes. We very much appreciate the inclusion of human services agencies, as Dr. Ghaly noted. My members saw w/ Whole Person Care that you cannot separate these aspects of one's life, and I'm glad to bring that perspective.
Cary Sanders/CPEHN
01:37:00
Agree with comments Michelle Gibbons - important to define the use of HIE beyond the individual to include use for public health purposes - also @Michelle Cabrera, would love to see this data be available across payers and providers
Mark Savage
01:38:30
Fortunately, federal law (HIPAA Privacy Rule, certified EHR technology) gives every Californian the right to access and use their health data, in support of the vision. The aspiration is to make it real for ALL Californians now.
Claudia Williams (Manifest MedEx)
01:39:41
+1 to Mark's comment - every California has a right to access and use their digital health data but we have a ways to go to make that real
Paul Markovich
01:41:22
Also agree with Michelle's point. This initiative should fully support our public health efforts.
Heather Readhead (CDPH)
01:41:40
Echoing Michelle Gibbons' comments about the important of population/community-level data to inform policy and program decisions. In addition to public health, occupational safety programs like Cal/OSHA, payors and purchasers all are invested in keeping their populations healthy and understanding the causes of preventable morbidity and mortality.
Claudia Williams (Manifest MedEx)
01:42:01
Agree Linnea that we need to focus on behavioral health data exchange. It remains very complex and confusing due to both real legal barriers, technology limitations and cultural/business challenges
David Ford (CMA, he/his/dude)
01:42:56
+1 from CMA to Mark's comment. Under the 21st Century Cures Act Final Rule (aka Information Blocking), the feds have shifted 100% in the direction of putting the patient in control of their own data. With the rise of app-based data exchange, the technology is moving that direction as well.
Claudia Williams (Manifest MedEx)
01:42:58
Good to remember that "standards" are not just technical but can also be policy, process etc
DeeAnne McCallin (CPCA)
01:43:53
@David Ford and @Mark Savage πŸ‘
David Ford (CMA, he/his/dude)
01:54:23
130290(g) The California Health and Human Services Agency shall work with experienced nonprofit organizations and entities represented in the stakeholder advisory group in subdivision (c) to provide technical assistance to the entities outlined in subdivisions (e) and (f).
Paul Markovich
01:56:22
My input on the vision statement regarding making the usability of data a critical part of our success also applies to the charter.
Michelle Cabrera, CBHDA (she/her)
01:57:55
As mentioned earlier, would appreciate more explicit call outs in the charter on the need to consider data related to justice, law enforcement, education data, etc. which are also either providing health/human services or key in informing case management and outcomes.
Kevin McAvey (Manatt)
01:59:42
Thank you again for all comments/questions in the Q/A. All are being documented and will be reviewed.
Claudia Williams (Manifest MedEx)
02:01:27
Here is the topic I would like to see added to topic list on page 4 of the charter;: "Implementation of information sharing requirements including incentives and enforcement to ensure that all providers and payers share real-time health information"
Sandra Hernandez
02:02:17
Regarding group purpose: suggest we flush out the various government agencies we hope to include in this framework. Many important departments esp Public Health, detention health, social services,
Kevin McAvey (Manatt)
02:03:08
These are terrific, helpful suggestions. Thank you all - and please keep them coming.
Cary Sanders/CPEHN
02:03:42
+1 to Anthony's comments. These topics seem focused more on providers/payers than on individuals. We would support a bullet on consumer experience
DeeAnne McCallin (CPCA)
02:03:56
+1 from CPCA to Carmela Coyle
Michelle Gibbons
02:04:02
Would second flexibility to use proxies in limited situations. With the ongoing nature of the pandemic, there may be instances where folks are suddenly pulled away.
DeeAnne McCallin (CPCA)
02:04:36
to Carmela Coyle's "consistent with federal policy and law"
Sandra Hernandez
02:04:54
Second the notion of supporting safety net providers participation,TA and financial support as necessary
Erica Murray, CAPH
02:05:32
Adding a third per Dr. Hernandez's comment above
David Ford (CMA, he/his/dude)
02:06:14
@Cathy - Great addition to the comments about TA. The "why" is as important as the "how."
Michelle Cabrera, CBHDA (she/her)
02:06:44
Also +1 to Dr. Hernandez's point. TA/guidance by the state on consent management would be essential to achieving these goals.
Mark Savage
02:07:20
Re good comments about "consumer experience", would add "consumer use/usability" as well--making use real for Californians.
Paul Markovich
02:07:50
If we are going to add something about being consistent with the law it should be both state and federal laws and regulations. By way of example, HIPAA defers heavily to states on defining the exchange and uses of data. The CA legislation recently signed into law supersedes at least some federal law and regulations.
DeeAnne McCallin (CPCA)
02:07:51
+1 CPCA to CMA (David Ford) verbal about TA
Michelle Cabrera, CBHDA (she/her)
02:08:48
Would be remiss if I didn't call out that many of our low-income communities won't have many means to view/use their data. Some, such as individuals who are not housed, or post-disaster may not have their own identifying documents. We need to balance our expectations and consider these experiences moving forward.
William Barcellona
02:09:08
πŸ‘
David Ford (CMA, he/his/dude)
02:09:09
πŸ‘(as amended)
Claudia Williams (Manifest MedEx)
02:09:10
I did not hear you mention the issue I raised about the compliance/incentives. Can we add it to the list?
Scott Christman
02:09:11
πŸ‘
Liz Gibboney
02:09:11
Recommend advancement with amendments as stated
Mark Savage
02:09:12
Mark Savage--good to move forward.
Michelle Cabrera, CBHDA (she/her)
02:09:16
πŸ‘
Scott Fujimoto, CDPH
02:09:18
πŸ‘
Jamie Almanza (Bay Area Community Svcs)
02:09:19
πŸ‘
Andrew Bindman
02:09:20
Would prefer to wait on endorsing until seeing ammendments
Linnea Koopmans - LHPC (she/her)
02:09:25
πŸ‘
DeeAnne McCallin (CPCA)
02:09:26
πŸ‘(as amended)
Paul Markovich
02:09:36
Yes, as amended (should include state and federal law not just federal law per my earlier comment)
Craig Cornett, CAHF
02:09:36
πŸ‘
Claudia Williams (Manifest MedEx)
02:09:38
πŸ‘πŸ» as amended
Sandra Hernandez
02:09:40
Yes as amended
David Lindeman (CITRIS UC Berkeley)
02:09:43
Recommend advancement πŸ‘
Cary Sanders/CPEHN
02:09:45
Would prefer to see with amendmentsπŸ‘πŸΌ
Ashrith Amarnath
02:09:49
πŸ‘
Michelle Gibbons
02:09:50
Would prefer to see the edited version.
Heather Readhead (CDPH)
02:09:50
yes, as amended
Alma Hernandez
02:09:51
Yes
Erica Murray, CAPH
02:09:57
Yes with review of amended
Cathy Senderling-McDonald (CWDA, she/her)
02:10:00
Is it possible to review again and potentially make some additional amendments? IF so, vote AYE to move along today.
Anthony E. Wright
02:10:06
I support moving forward with amendments for one meeting, but with another opportunity to review as amended.
Claudia Williams (Manifest MedEx)
02:10:09
Good job Jonah!
Dan Southard (DMHC)
02:10:25
πŸ‘
Kevin McAvey (Manatt)
02:16:47
Thank you all again for joining. Please email CDII@chhs.ca.gov if you would like to be added to our mailing list.
Kevin McAvey (Manatt)
02:17:01
All meeting materials will also be regularly posted at https://www.chhs.ca.gov/data-exchange-framework/
Kevin McAvey (Manatt)
02:18:13
Please note a correction: CIE San Diego launched in 2014 (not 2-1-1 San Diego)
Mark Savage
02:19:06
Would be good to see the previous graphic of California with "Californians" included--the diverse patients needing access and use.
DeeAnne McCallin (CPCA)
02:21:09
Curious about the Interoperability component of the Cures Act (where Payers have requirements to be met), though full slide (Dx History in CA) might be another block to add
Mark Savage
02:21:20
*graphics of California at slides 29-32.
Kevin McAvey (Manatt)
02:25:46
Thank you all again for joining us. Please share your thoughts in this meeting's Q&A box, listed at the bottom of the webinar screen. We want to hear from you.
Rim Cothren (consultant to CDII)
02:26:08
Thanks to those that have noted that it was CIE San Diego that launched in 2014, not 2-1-1 San Diego. Sorry for that error and thanks for the correction.
Kevin McAvey (Manatt)
02:26:18
Please also stay posted on the latest updates by emailing CDII@chhs.ca.gov to "Join our mailing list"
Kevin McAvey (Manatt)
02:26:51
Meeting materials will be regularly posted on our new website: https://www.chhs.ca.gov/data-exchange-framework/
David Ford (CMA, he/his/dude)
02:28:37
I think Rim's presentation is important in that I often hear people say things like "we don't do HIE in this state." Actually, we do a heckuva lot of HIE. Our goal should be to build on all of the work that has been done and bring new players into the system. Also, we need to ensure that the various private and public networks can speak to each other, so information gets to where it needs to be.
Cathy Senderling-McDonald (CWDA, she/her)
02:28:52
@cary more information about CTEN here: https://www.ca-hie.org/initiatives/cten/
DeeAnne McCallin (CPCA)
02:30:12
valid points earlier in chat about both Federal and State laws. Have run into challenges in past where the Federal law was clear, present. Yet finding what CA state law applied too often a rabbit's hole. Having a CA resource (@ca.gov) that ties our state laws to Federal might be of value.
Linnea Koopmans - LHPC (she/her)
02:30:30
When looking at the California context and recent landmarks, is it appropriate to also include the approval of a Medi-Cal Population Health Management service? If not for the timeline, would be interested in knowing if/how that intersects with the work of this group.
Michelle Cabrera, CBHDA (she/her)
02:31:38
I wanted to flag that among CalAIM's many proposals, we will be modernizing/updating the specialty behavioral health safety net in California through: payment reform, updating coding, as well as aligning with a more standard problem list for documenting encounters. This work will be essential to this type of cross-system communication, and I wanted to make sure that our partners were aware of this heavy lift underway within DHCS, counties and their contract providers under CalAIM.
DeeAnne McCallin (CPCA)
02:32:00
+1 on the survey response "without being duplicative"
Claudia Williams (Manifest MedEx)
02:32:14
Thanks for taking my comment @jonah - to expand, would like to see a definition of exchange that includes all the tasks to combine data from many different sources to create actual longitudinal records for patients that are usable. So matching, attributing, combining, cleaning, etc
Sandra Hernandez
02:34:08
Important that the data itself include elements regarding race, ethnicity, gender identity
Michelle Cabrera, CBHDA (she/her)
02:34:47
Also wonder if we will consider TA/support related to bias - whether conscious/unconscious among providers. This applies broadly to behavioral health conditions and associated stigma, as well as broader categories of disabilities and data related to housing status, REL and SOGI data.
Cary Sanders/CPEHN
02:36:05
I'm seeing lots of comments and questions from the general public in the Q&A - will you provide a synthesis of these for the HIE workgroup members now or in future meetings?
Kevin McAvey (Manatt)
02:36:52
We will summarize public comment to inform future meeting deliberations
DeeAnne McCallin (CPCA)
02:36:53
@Jonah, can you quickly re-state the two not on this slide
Cathy Senderling-McDonald (CWDA, she/her)
02:37:05
It feels like the answers to these questions (and what the priority might be) may be dependent on what level of use we are talking about - the individual level access, the use by practitioners/service providers, and the statewide/macro/research type of use, all may have somewhat different answers and priorities.
Michelle Cabrera, CBHDA (she/her)
02:37:54
Agree with Erica's point on the need to provide not just TA but actual investment to support these goals. In addition +1 to Cathy's excellent point in the chat.
DeeAnne McCallin (CPCA)
02:39:38
@some of the chat comments and slide content about what data information, access, equity, etc. - the COVID-19 vaccines and the data collected or not collected has a lot of lessons learned we should look to. For example, cell phone number - not every resident has a cell phone or of the many that do have not all want to share it.
Claudia Williams (Manifest MedEx)
02:44:24
+1 to point of many in this group to define TA and support needed for safety net providers. It would be good for us to review/discuss successes and challenges with the Cal-HOP program, which ends in September. Its main goal was to help Medicaid providers participate in health information exchange. What worked? What did not?
Sandra Hernandez
02:45:09
I’m not sure that it is the safety net providers that are more fragmented in care delivery but rather the patient population they serve often have needs and services across different programs and agencies. Important to recognize that their populations have higher social needs then some of the more integrated system populations
Anthony E. Wright
02:45:37
+ 1 Mark's comment: The focus on All, the focus on Diversity.
Claudia Williams (Manifest MedEx)
02:45:38
That is such an important point @SandraHernandez
Anthony E. Wright
02:46:53
+ 1: Paul's comment. Not just privacy, but security, and ultimately ensuring the *trust* of patients and the public, or this won't work.
Michelle Cabrera, CBHDA (she/her)
02:46:54
@Andy, it's easy to think of it as fragmentation when you're not partnering across so many systems (e.g. in schools, in courts, in child welfare departments and in the streets, etc). Data integration does not equal clinical integration or necessarily lead to better outcomes for individuals with significant multi-system social needs. Data is a piece of the story, but this goes back to Cathy's earlier point about how we're defining our goals and success.
Michelle Cabrera, CBHDA (she/her)
02:47:23
To Sandra's point!
Cary Sanders/CPEHN
02:47:45
+1 to Paul's comment on establishing trust - also important to approach these data sharing and use agreements in trauma-informed ways
Kevin McAvey (Manatt)
02:48:29
Thank you all again for joining us and for sharing your feedback in the Q&A. Please email CDII@chhs.ca.gov to stay apprised of Data Exchange Framework developments, and bookmark our new website to access meeting materials: https://www.chhs.ca.gov/data-exchange-framework/
Claudia Williams (Manifest MedEx)
02:48:55
One of the important federal contexts for this work is information blocking, which essentially requires data sharing when it is legal to do so. We should think about how that influences our own deliberations and recommendations
David Lindeman (CITRIS UC Berkeley)
02:51:47
+1 to Cathy Senderling-McDonald’s comment that this effort, including goals and use cases, needs to be differentiated by level of use: individual, providers, macro/policy
Linnea Koopmans - LHPC (she/her)
02:51:56
Re: the goals, I want to emphasize the development of priority use cases. This will help us get to the "why" that has been mentioned today, and fulfill the statutory requirement of identifying data that should be shared "at a minimum." While the vision statement is appropriately broad, more data is not necessarily always better unless there is a clear purpose for it.
Erica Murray, CAPH
02:52:22
+1 to Linnea's comment above
Claudia Williams (Manifest MedEx)
02:53:06
Also +1 Linnea's comment
DeeAnne McCallin (CPCA)
02:53:08
+1 to Linnea's (& Erica's +1)
Cathy Senderling-McDonald (CWDA, she/her)
02:54:24
Is there proposed to be a "data sharing agreement' sort of subcommittee? Are we allowed to add our designees to some of these groups? For example, my designee is WAY more knowledgeable about data sharing agreements than I am, but I'd be the natural fit for the subgroup that talks about SDOH etc.
Kevin McAvey (Manatt)
02:55:56
For reference re: digital identities: "(h) On or before July 31, 2022, the California Health and Human Services Agency shall develop in consultation with the stakeholder advisory group in subdivision (c) a strategy for unique, secure digital identities capable of supporting master patient indices to be implemented by both private and public organizations in California."
Michelle Gibbons
02:57:46
agree with Michelle Cabrera. We need to define the what.
Claudia Williams (Manifest MedEx)
02:57:53
I agree with @michellecabrera that workgroups need clear charges and should be given specific policy or technical questions
Cathy Senderling-McDonald (CWDA, she/her)
02:59:28
+1 Michelle's comments, clear charge for these groups is critical to meeting deadlines and providing good feedback.
Claudia Williams (Manifest MedEx)
03:01:34
It is not clear to me what the data sharing agreement needs to include or what it's purpose is. I think we need more discussion/agrreement in this group before we charge the group
Paul Markovich
03:02:12
I support the proposal on dividing up the work and forming subcommittees.
Andrew Bindman
03:02:54
If data sharing so important why not whole group
Cary Sanders/CPEHN
03:03:11
+1 to Michelle's comments. Equity and consumer experience is not a sub-discussion - it's a relevant component of many of these topics. I suggest we make these components part of the criteria for the development of all of these sub-topics including data sharing agreements
David Ford (CMA, he/his/dude)
03:03:14
πŸ‘
Liz Gibboney
03:03:43
I support beginning work on the data sharing agreement, recognizing that progress will be reported back to this group.
Linnea Koopmans - LHPC (she/her)
03:04:11
πŸ‘ (with communication outside of the meeting today to more precisely define the scope and purpose)
Mark Savage
03:04:14
πŸ‘ move forward committee, recommend cross-fertilization
Scott Christman
03:04:18
πŸ‘
Paul Markovich
03:04:22
Thanks everyone. I must sign off for a 12 noon meeting.
William Barcellona
03:04:27
πŸ‘
Dan Southard (DMHC)
03:04:28
πŸ‘
Craig Cornett, CAHF
03:04:29
πŸ‘
Scott Fujimoto, CDPH
03:04:32
πŸ‘
Cathy Senderling-McDonald (CWDA, she/her)
03:04:34
Yes, subgroups should be gotten going, with understanding of additional work to define.
David Lindeman (CITRIS UC Berkeley)
03:04:36
πŸ‘
Claudia Williams (Manifest MedEx)
03:04:37
πŸ‘πŸ»
Michelle Gibbons
03:04:43
πŸ‘πŸΎ
DeeAnne McCallin (CPCA)
03:04:43
πŸ‘
Michelle Cabrera, CBHDA (she/her)
03:04:48
+1 Cary's suggestion that the elements laid out before (equity, BH, SDOH, etc) should be integrated into the technical/expert feedback across topics.
Ashrith Amarnath
03:04:51
πŸ‘
Jamie Almanza
03:04:52
πŸ‘
Charles Bacchi
03:04:54
πŸ‘
Heather Readhead (CDPH)
03:05:27
πŸ‘with clarification about nomination process for subject matter experts to participate in subcommittees
Liz Gibboney
03:05:27
I suggest sending meeting dates for this group out soon…at least those through end of CY 2021. Thanks!
Kevin McAvey (Manatt)
03:05:37
Thank you to all of the Advisory Group Members for your participation today.
Kevin McAvey (Manatt)
03:06:05
Dates into the new year will be shared in the coming days
Cary Sanders/CPEHN
03:06:08
Thumbs up with caveat above re: equity/consumer experience but also SDOH and BH.πŸ‘πŸΌ