Episode 22: Bridging Interoperability Across Healthcare and Human Services and the Role of Consent
This episode features guest, Daniel Stein, President of Stewards of Change Institute (SOCI). The discussion explores why connecting the healthcare ecosystem with human services is critical and goes on to highlight the role of consent specifically highlighting the new “Modernizing Consent to Advance Health and Equity” report published by SOCI with industry input.
Co-host, Ed Daniels, Senior Consultant with POCP, then introduced himself explaining that he’s worked in Health IT for over 30 years and has been working in the world of electronic informed consent over the last several months.
Guest, Daniel Stein, President of SOCI then introduced himself and gave an overview of the work of Stewards of Change. He first focused on SOCI, which is a non-profit that cuts across and connects all the public welfare and safety net programs from healthcare to social services. SOCI has worked to bring together all the different players in these realms. Daniel explained that he got started in this work 20 years ago after a career at Kraft Foods working in project management. He started working with a non-profit in California and became intrigued by how certain business practices could be applied in the non-profit world and that’s how he started on this path.
Daniel explained that he gained insight from work he did related to child welfare in California and New York, he observed there were huge disconnects between the services families really needed and the ability of families to access these services. It was clear these families were already stressed and then were asked to jump through hoops and hurdles to understand eligibility, fill out documentation and such to get the services they needed. On top of that there was a lot of duplication between service providers. He made the point that If you wanted to design a worse program, you really couldn’t. Daniel explained that he started to ask how this bumpy process of accessing services could be smoothed out.
Ken then pivoted to ask Ed about his background in emergency services and other work he’s done to give his perspective of the problem outlined by Daniel. Ed agreed that he recognizes that disconnection Daniel outlined and its impact on people and their families. Ed then pointed out the role of consent in contributing to that problem of disconnection. Ed then asked Daniel how he feels the industry is doing at tackling these issues.
Daniel responded by saying that he’s encouraged that there has been movement over the last couple of years specifically the acknowledgement of the importance of social determinants of health and the need to explore how to capture that information. While healthcare is taking steps in the right direction, there still seems to be some hesitancy. Healthcare is so large and so complex, it’s still somewhat insular with just a few systems and solutions starting to look at connecting outside of healthcare.
Ken followed up by asking for Daniel to dig into the work to connect healthcare and human services, and specifically about Project Unify. Daniel responded that in the beginning of the Obama administration, SOCI had the opportunity to work on the Affordable Care Act (ACA) through a contract with the Administration for Children and Families (ACF). In the ACA, there was a provision that explicitly looked to integrate health exchanges, the infrastructure of the ACA and all the services under HHS. This provision is still in the rules and regulations. Recent guidance coming out of CMS has reiterated this provision. SOCI helped translate this provision and communicate it out to the states at the time. Unfortunately, things didn’t go as smoothly as one would hope primarily due to the complexities of the ACA. It also became clear that there was a lack of connection between the Centers for Medicaid and Medicare Innovation, CMS, Office of the National Coordinator (ONC) and ACF. SOCI was instrumental in helping bring these federal agencies together to better understand the whole person approach to care.
Daniel explained that Project Unify grew out of a 4-year initiative funded by the Kresge Foundation. SOCI’s proposal to Kresge outlined the need to bring together subject matter experts (SMEs) from across healthcare and social care to avoid recreating the wheel. SOCI used the funding they received to establish the National Interoperability Collaborative (NIC). The NIC’s purpose is to bring all these various stakeholders together to share information about the challenges and initiatives to solve problems being done across the various fields and cross-pollinate. The NIC has been holding conferences and has hosted over 75 webinars over the last several years.
While sharing information on these webinars and conferences was helpful, those involved in the NIC wanted to do more than talk and to take on a project that was really doing something. Something. That is how Project Unify was born. The vision for Project Unify was to demonstrate how data interoperability and data exchange could happen across all the siloes of healthcare, human services, and other areas. The work on Project Unify led to the work on consent that SOCI has started to focus on.
Ed added that he has participated in several SOCI webinars and recounted a particular session where a local county agency’s project to connect the various services in their locale. The attendees of that session expressed that their agencies don’t even have standard systems within their own agency. Many expressed that they are just working to create standard forms they can use across agencies and that they’ll work on harmonizing the technology later.
Ken pivoted to focus of the conversation to health equity and social determinants of health. Daniel explained that SOCI’s focus on social factors and health equity grew during COVID. SOCI was preparing for a conference in early 2020 and pivoted to make it virtual rather than cancel because they didn’t want to lose momentum and then focused on what the NIC could do during the pandemic to make a difference. The NIC brought together stakeholders almost every week and this effort was nicknamed the “interoperability support group”
Daniel went on to say that one of the things that stood out during COVID was that so many of the communities hit hardest by COVID were the poor, black, brown, and undocumented people. The lack of services, access and transportation in these communities exacerbated the issues. It became clear that if these challenges were going to be overcome, that these communities needed to be at the table to offer their perspective. Health equity has become a major focus of the administration and of the industry. For SOCI and NIC, as they began bringing members of these communities into the conversation, the issue of consent, data stewardship and trust bubbled to the surface.
Ken picked up the thread of consent and brought up the comprehensive report SOCI recently published entitled “Modernizing Consent to Advance Health and Equity”. Ken explained that as he sees it, consent is a complex and layered issue because most people don’t have medical or legal degrees and understanding the information, they have been given access to and the consequences of consenting to give access to others. Ken asked Daniel to explain his perspective and how this paper on consent came to be.
Daniel responded by saying that exploring consent has been one of the more fascinating roads he’s been down. Over the course of holding all these meetings with this diverse group of stakeholders, they started to ask what one or two things could be done to really make an impact. Through an iterative process, the group came up with about six recommendations and consent was one of them. Consent has such a broad impact and not just in healthcare. For example, if one wants to share school attendance or grades, foster care status, consent is needed. Consent is the blocker of data sharing and interoperability. It became clear that this was a challenge across every area and if small improvements could be made, it could have a tremendous impact.
The group recognized that this issue was certainly bigger than healthcare. There needs to be a whole person view through coordinated care. Daniel added that fixing one thing doesn’t get us to the goal line but at the root of coordinated care is giving people the ability to access data from different areas. The only way that will ever happen is people can give consent to remove a lot of the friction of sharing data. The technology piece can be figured out later.
Ed, who was involved in helping develop this report, added that through talking with various organizations about their challenges and attempts to solve the issue of consent, they gained a lot more insight into the complexities of the issue. In healthcare, privacy has always been a big issue but at the same time we all want the right information to be shared with the right people if it’s going to impact our care such as advanced directives or clinical trial matching. Add to that social factors that impact health or indicators of issues in non-healthcare settings would also be helpful to have in the healthcare setting. But the same is true in non-healthcare settings. In social programs having a more complete picture of someone’s life can help the program provide more appropriate resources. As people move from state to state, having those consents following them is another factor.
Daniel explained that there was consensus across the board that consent is a challenge but there was a lack of awareness of the work being done across jurisdictions, programs, and care settings and it was impossible to build upon the work that’s already been done so one of the first things SOCI did was identify and document the consent work already being done so that work can be built from.
Daniel added that there is another side of the equation. It may be necessary to temper our enthusiasm for getting and sharing this kind of data. As SOCI has talked to people in these communities, they were told it’s very important for this information to be taken back to the family so a decision can be made as a family.
Ed agreed and added that while solving the technical ability to document consent, we can’t forget that the data being exchanged belongs to a person. We’re all patients so this shouldn’t be a hard perspective to keep in mind for any of us.
Ken brought up 21st Century Cures regarding who regulates the data once the patient has given consent to share it with a 3d party app or another actor not covered by HIPAA. One must wonder if the data is really being protected.
Daniel said that they found that most people assume their information is being shared and don’t want to be filling out a consent form for the 14th time. Many times, it’s the lawyers who are advising multiple documentation of consent to mitigate risk. Ultimately, we have the capability to make this information accessible, but we need more uniformity and not have the data all over the place. Maybe we need a trusted entity that can be the traffic cop and authorize the flow of information and authorize access based on roles to say this person is granted access to this information for this purpose, for this period of time. There is some work in this area that is working to demonstrate how this could work.
Ed pointed out that the report goes into all of this in detail, and it may seem daunting. He recommended that readers review the executive summary first and then dive into specific sections of the full report if there is interest to dig a little deeper.
Ken, in closing out the podcast, asked Daniel to share any other issues he’d like to highlight or calls to action for the industry.
Daniel responded by saying he is heartened by the interest of federal agencies and other organizations in doing work to solve the challenges around consent. Daniel expressed his hope this report will help support the work in this area. SOCI will be holding more webinars over the coming months to discuss consent and other issues and Daniel invited all listeners to get involved by attending some of these sessions which will be posted on either the NIC events or SOCI events pages.
Ed added that these events aren’t just work, but also have an aspect of fun, networking, and an opportunity to make connections outside of one’s normal circles.
Ken closed the episode by thanking Daniel for joining the Dish on Health IT podcast.