Episode 16: Social Determinants of Health & the SIREN/HL7 Gravity Project
This episode of The Dish on Health IT features distinguished guest Evelyn Gallego, CEO at EMI Advisors and Program Manager at the SIREN HL7 Gravity project. Our new host Ken Kleinberg along with co-hosts Jocelyn Keegan and Pooja Babbrah talk with Evelyn about value propositions for collecting social risk data, establishing agreed upon language and vocabulary for social determinants of health (SDoH) data and the issue of consumer and patient privacy.
For those who don’t know, what is social determinants of health (SDoH)? Evelyn quotes the World Health Organization’s definition of SDoH, which defines it as the conditions in which we are born that effect our overall health. To put this in perspective, it is estimated that over 50 percent of our overall health is driven by socioeconomic factors and our physical environments.
Evelyn notes that as the industry shifts towards value-based care, organizations are increasingly pressured to address some of these unmet social needs that negatively impact patient health outcomes. Disparities among racial and ethnic groups have been further exasperated during the COVID-19 pandemic. In fact, nearly 47.8 percent of COVID-19 deaths (from May 2020 – August 2020) were people of color.
She states that there are obvious value propositions for collecting and using social risk data. The collection of this data not only would improve clinical care and delivery of care, but it also would improve social risk interventions, population health management, community health improvement and research. However, Evelyn explains that even though the business case is made clear, clinical systems have not been able to consistently and effectively address social needs due to the existing challenge of how to document this data.
Ken asks Evelyn to further discuss the specifics of the Gravity project. She shares that the Gravity Project began in May 2019 with goal of developing consensus-based standards for the interoperable data exchange of SDoH across health services systems. The project was initiated by Social Interventions Research & Evaluation Network (SIREN) with funding from the Robert Wood Johnson Foundation. There were three specific social risk domains that the project focused on, and those were: food insecurity, housing instability and quality, and transportation access. Evelyn says those three risk domains have been tackled since, and they have moved on now to financial insecurities, education status, employment status, veteran status, social isolation, stress, and interpersonal violence.
Since its inception, Evelyn says the project has had over 1500 participants in the health and human services ecosystem. Her team found success in reaching out to a large number of players with their value proposition and welcomed them a seat at the table. Many of these community-based organizations (CBOs) are weary of health systems, and fear medicalizing SDoH, yet want to help establish agreed upon language to ensure clear understanding of all parties involved.
Evelyn and her team had overwhelming interest in this area to which they realized their current model of operating would no longer be sustainable. They needed to raise money and looked to the Da Vinci project’s structure for guidance. In August 2019, Gravity became an official FHIR accelerator. Evelyn said they wanted to make an initiative that would incentivize different stakeholder groups to participate and sponsor, and not make it a pay to play model because they still needed stakeholders who would never sponsor the project still be at the table.
Jocelyn jumps into the conversation and says the FHIR community has the ability to bring the right people, the right model, and the right funds together to get work done faster.
Jocelyn explains that we will not get the patient impact we want to see if not all stakeholders are engaged with this process. We can build all the implementation guides we want, but if no one picks them up and uses them, there is no point. Jocelyn applauds Gravity for being hands on and for bringing incredibly dispersed and perpetually underfunded stakeholders to the table.
Ken asks Evelyn about the use and value of FHIR interoperability, pilots and testing and potential challenges. She says that Gravity’s process has two workstreams: terminology and technology. The project started out to address coding gaps in the market. FHIR standards move data from one point to the other, but data definitions must be in place in order to understand that data. It goes hand in hand.
The Gravity project has three use cases and one FHIR implementation guide focused moving clinical care data to CBOs. Evelyn and team are currently funding by ONC, under the HL7 cooperative agreement, to investigate what standards are used by CBOs as well as what data infrastructure exists and how can they be made FHIR compatible. She notes that we do not know for certain if FHIR is the best way to exchange information in CBOs. We’re working on that.
She goes on to say Gravity engages a lot with government agencies, Administration of Community Living (ACL) being one. ACL provides grants to state agencies on aging to support elderly services in the community. ACL issued a challenge grant for innovations in the market, and they made it a requirement of the grant to adopt the Gravity standards. This is huge.
Finally, Evelyn stresses that we can’t ignore the power of mobile technology. How do we use mobile technology to support referrals, ultimately allowing individuals to finish the loop? For example, using QR codes for individuals referred to a food bank. They go to the food bank, use the QR code, and then receive or don’t receive food (depending on the available resources). We would be able to receive feedback to see if 1) the individual went to the food back and 2) they were able to receive food.
Jocelyn notes the importance of identifying where endpoints are in the community. Ones that we can leverage and better enable technology but that’s not going to be an expensive IT system.
Pooja wonders if there are international examples we could be looking to for mobile technologies. Where else could we look in foreign countries where they are making connections and using existing rails that are already there, especially for some of the CBOs?
Ken moves the discussion to the burdens of SDoH. Evelyn notes the obvious, ongoing provider burden in documenting SDoH information. She also brings up the burden CBOs face with SDoH around capacity, they are not equipped to start receiving referrals.
Jocelyn explains that as soon as organizations receive direction from regulation, that dictates how goals and efforts are prioritized. We hear people say they don’t want additional regulations, but we see organizations often don’t prioritize certain things unless they are under regulation. The FHIR community is a great example of how providers, payers, vendors and the government can come together to put those “levers” (regulation) in place.
Ken brings up the final topic. He asks Evelyn to speak to consumer and patient privacy. She states we must remain vigilant. We must work to maintain privacy, security and equity as we collect and share whole person data. The Gravity project works with very large communities of people to advance towards collecting and sharing SDoH data; creating standards; scaling standards. But it must be done judiciously.
Evelyn notes that as more data is collected, it has the potential to further disadvantage those who were already marginalized or socially excluded. If social risk data is collected, she has had feedback that there is a fear of judgement for those individuals.
The Gravity Project just published data principles, which outlines how to use SDoH data in an ethical way. We do not want to further exasperate what we see in the market. Patients must trust us to use their information in the right way. Consent will be key to all of this.
Pooja adds that the stigma around mental health will add complexity to patient consent. What will patients want to share? Will it only be a portion of their information? This is a huge topic we must work through, but the data principles Evelyn mentioned is a step in the right direction.
Ken asks Evelyn for her final remarks. She wants to plug Gravity pilots for her concluding remarks. She us currently raising funds for the pilots. She wants to have a diversity of actors testing the pilots, which makes the funding all that more important. We cannot achieve interoperability without having all the systems responsible for capturing and sharing data come to the table. Standards cannot be matured without first testing in the field.