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CHHS Data Exchange Framework Stakeholder Advisory Group Meeting - Shared screen with speaker view
Emma P., Manatt Events
21:24
The program will begin shortly.
Kevin McAvey
27:50
Dr. Hernandez is not able to make it today. Special thanks to Hong Truong who is listening in on her behalf.
Kevin McAvey
31:17
Julie Lo sends her regrets, but thanks to her staff listening in
Kevin McAvey
32:11
Diana Toche also sends her regrets, special thanks to Cheryl Larson for listening in
Claudia Williams
45:04
Do you want us to suggest missing principles now, or after discussing the set you have proposed
Michelle Gibbons
45:15
Stepping away for a moment. Sorry
Linnea Koopmans
46:36
Question - can you share more about the Consumer & Patient Protection Principles? Are these principles that the State formally adopted? Or are they referenced throughout because they resonate with the State and align with the priorities of the DxF?
Mark Savage
50:13
Agree with Kiran about the need for a next level of granularity and metric.
Andrew Kiefer
51:13
and accountability/enforcement.
Claudia Williams
54:10
Agree with Kiran and Mark about the need for more concrete and specific principles. As they are stated they are more like "goals" and wont give us enough direction on making hard choices
Claudia Williams
55:23
Agree with Carmela that the principles need to be more "data exchange" specific as well
Kevin McAvey
01:00:24
Terrific comments. Please keep them coming - what's missing? what do we need to think about across these principles (e.g., adding details)? Do you have any specific suggested edits to any?
Michelle Gibbons
01:01:25
agree on the needs for guidance.
Lori Hack
01:04:02
I agree with Claudia that we need to imbed the operational/tactical principles and goals within each principle.
Mark Savage
01:05:23
What's missing? I noticed the consumer/patient principles that were not included: (4) on universal design and interoperability, (6) on preventing misuse of health data, (7) on patient partnership and HIT literacy (although this could have been included in part with principle 3 on whole person care), (8) on accountability, and (9) on enforcement. Not sure why. There was a lot of thinking about why those principles or tools are also critical in conjunction with those listed.
Claudia Williams
01:05:45
Here are the operational principles I recommend adding to ensure the framework actually WORKS and DELIVERS on our goals- Decrease burden, complexity and cost of exchange- Leverage the methods and networks that are already being used - don't rip and replace, don't duplicate- Ensure every plan and provider can create longitudinal records needed for population health and whole person care- Focus on most important use cases first - don't boil the ocean
Andrew Kiefer
01:05:45
Another wys to put is that we should prioritize the 'types' of data collection. Ultimately, there should be some hierarchy to the types of data we collect. And these data points support the advancement of equity, quality, etc.
Andrew Kiefer
01:06:19
agree with Claudia
Mark Savage
01:07:37
To Andrew's comment about data types, I find that the same data element is used for multiple priority use cases, so suggest thinking in terms of use cases as well as data types.
Mark Savage
01:10:09
Agree that the articulation in this draft is more about the institutional actors than the individuals, family caregivers, etc. All are important for shared decision-making and shared care planning--which are core!
Michelle Doty Cabrera
01:14:13
Agree with Erica's point on #4
Amanda McAllister-Wallner (she/her)
01:14:51
Agree, patient access should be separate principle from privacy & security.
Lori Hack
01:15:47
Agree with Kayte Fisher, informed consent and data use and audit is critical to trust for data sharing
Lori Hack
01:19:26
Forgot to mention that the health plan/insurers/intermediaries are not listed in these principles and they are part of the network
Andrew Kiefer
01:20:16
I think the goal of 'usability' of the data is eluded to in 2, but it's not abundantly clear and should be elevated.
Claudia Williams
01:24:56
Love Michelle's vision of the data exchange framework contributing to community, not just individual, health
Mark Savage
01:28:03
The consumer/patient principles can help because they do exactly that: benefits for individual health, benefits for community/population health.
Mark Savage
01:29:49
Re principle 5 on standards, also USCDI v2 on SDOH data, SOGI, all care team members including community/social services, etc.
Claudia Williams
01:32:12
Agree that TEFCA is one thing to align with, but I don't think we should assume that TEFCA will be broadly adopted. There is far too much uncertainty today since it is a voluntary framework with no real federal policy hooks (incentives/requirements). So we need an approach that is resilient to whether or not TEFCA takes hold. Also TEFCA primarily applies to network to network exchange. Whereas AB 133 applies to each individual healthcare organization
Andrew Kiefer
01:34:23
in the context of accountability/enforcement, the broader point is ubiquitous participation of data sharing across the care continuum. The value of the data from both and individual and public health perspective is directly connected to compliance with the statute and the agreement that is adopted.
Kevin McAvey
01:49:59
Bonus points for holding to a minute, so we can get to as many Members as possible
Claudia Williams
01:50:15
challenge noted!
Claudia Williams
01:51:22
Great point about health departments not having needed data infrastructure
Kiran Savage-Sangwan
01:54:22
Agree w/ Mark - would like to see the "consumer data access" barrier strengthened to ensure language access and consumer friendly interface + acknowledge that "access" does not only mean ability to view the record but to correct it or otherwise interact
David Ford
01:57:50
@Kevin - That was 48 seconds. I want my bonus point.
Andrew Kiefer
01:58:52
Number 6 is perhaps the most important. if the data isn't standardized and consistent, it's difficult to make it usable in solving for our challenges. garbage in, equals garbage out.
Claudia Williams
02:04:24
Excited to hear from @Linette that there may be opportunities to address the challenges through state initiatives
Cathy Senderling-McDonald
02:05:47
I think it would be helpful to perhaps define "human services" or "social services" somewhere and distinguish between government entities like county HS departments vs community organizations that provide such services. Some of the barriers listed here for HS and SS organizations do not apply to government.
Claudia Williams
02:06:06
What does cost sharing look like - yes! Happy to hear from my federal and HIE peers that CMS MES funding can use "provider" cost allocation. That's pretty in the weeds but important.
Andrew Kiefer
02:06:16
great points Linette!
Cathy Senderling-McDonald
02:06:41
I'd also suggest we utilize one of those two names for it. Either human services or social services, unless there are different definitions (usually I see them used interchangeably though, we prefer human services).
David Ford
02:08:59
Rather than raise my hand again, I'll just note here that Education & Technical Assistance is probably the most important component of this whole effort, from CMA's perspective.
Michelle Gibbons
02:09:14
Under item 1. I would recommend implementation and ongoing T/A and training, keeping in mind staff change over time.
Lori Hack
02:11:29
Michelle, exactly right! My note as well. Training the staff as well as going back to the vendors when the product doesn't work is essential!
Lori Hack
02:12:55
The cost of building an interface so that the data in a clinic can be shared needs to be addressed. There is no business need to pay for connectivity when you can fax for almost free.
Mark Savage
02:14:27
Creating a culture of use!
Claudia Williams
02:14:34
As others say training and technical assistance is super important, but our opportunities to get federal funding for onboarding are limited now that HITECH has expired. Arizona has an interesting incentive model, paid to providers and hospitals through the MCOs, and not paid for by HITECH. That might be a model to adopt or examine
Amanda McAllister-Wallner (she/her)
02:14:52
Agree with Kiran’s point, and I think this goes back to the accountability question as well.
Kevin McAvey
02:15:16
Great comments all. Any final verbal comments on this set of major barriers?
Kevin McAvey
02:15:35
Please keep the specific suggestions coming in the chat.
Michelle Doty Cabrera
02:18:15
I have to jump to another call, but want to leave you all with the reminder to please include a goal of capturing disability related data. Physical disabilities and IDD are essential to ensure proper care delivery. Thank you!
Kevin McAvey
02:19:29
Thank you, Michelle
Charles Bacchi
02:20:46
I agree with Linnea- consistency would be great.
Linnea Koopmans
02:21:28
And we're looking forward to seeing that guidance! Thanks, Jonah.
Liz Gibboney
02:21:59
I also agree with Linnea and appreciate the work being done outside of the SAG on this.
Cathy Senderling-McDonald
02:24:08
At times, county counsel has a different interpretation of some laws.
David Ford
02:24:12
I feel like public health data is more a technological problem than a policy issue. We've seen over the last 20 months that there are some severe limitations to our public health data system in this state. It's one place where there is federal $ we should be pursuing.
Liz Gibboney
02:24:22
Can the SAG get a briefing on what the current rules in CA/feds are?
Claudia Williams
02:26:20
Agree with Linnea, Liz and others that we need to standardize the interpretation (and application) of state and federal data protection laws especially around behavioral health. We need to reduce friction and confusion that is now rampant
Claudia Williams
02:26:37
that does resonate @jonah
Jamie Almanza, BACS
02:27:14
yes makes sense
Linnea Koopmans
02:27:28
Agree with what you've outlined, Jonah
Lori Hack
02:27:31
yes Jonah, thanks!
Cathy Senderling-McDonald
02:27:48
Agreed. It's not a simple task across so many domains, we should recognize.
Claudia Williams
02:30:02
It would be good to evaluate what impact the last BH SHIG had. In my experience it did not really help. Why is that? I am guessing it was not directive and clear enough. But there may be other reasons https://www.chhs.ca.gov/wp-content/uploads/2018/10/State-Health-Information-Guidance-January-2018.pdf
Lori Hack
02:32:48
I think you should get the sub committee on digital identity established right away.
Claudia Williams
02:33:20
Dare I say... do we need to meet more frequently than monthly?
Claudia Williams
02:34:40
Are we going to need to review and provide comments on the recommendations of the common agreement group? Where does that fit into schedule?
Lori Hack
02:34:52
I agree with Erica that governance is critical. I would again suggest that some of the other recommendations be addressed by separate work groups.
Claudia Williams
02:35:56
Agree with Erica and Lori that we should have governance discussion sooner
Lori Hack
02:41:36
On the issue of the data framework, we need to be sure to take into account that hundreds of data participation agreements are already signed and in place with HIEs in CA.
Charles Bacchi
02:41:53
It would be valuable to see a revised set of principles in far advance of the next meeting so we can work on them and provide more comments. That would allow us to perhaps close this out in December. Thanks.
Claudia Williams
02:42:14
Agree with that point Charles
Lori Hack
02:42:38
The MMPA documents were used as the baseline and the CA DURSA is in place as well among HIEs. The design of the framework could be high level, code of conduct/notice of HIE Practice or something of that level.