Reflections of the Digital Health Data discussion at the MUD (Metropolitan Underwriting Discussion) Group Conference- 2024

As the industry’s underwriting conference season kicked off in NYC at MUD last month, I was fortunate to moderate a discussion among three great thought leaders: Paulo Pinho, MD who serves as the Chief Medical & Strategy Office at Discern Health; Christy Lane, Director of Insurance at Health Gorilla; and Jas Awla, who leads the Medical Data Solutions business at MIB. My goal in designing this panel was to lead a conversation focused on the unique challenges the underwriting community faces in accessing a full view of a patient’s history using digital health data. To achieve this, I invited fresh voices to the panel from people whose backgrounds have touched both healthcare and digital data.

The panel discussion worked through several topics, including a conversation around the numerous acronyms that accompany the legislation, standards, frameworks, and agreements that support accessing digital data (TEFCA, QHIN, FHIR, etc.) While our high-level dialogue on acronyms set the stage, the core of our discussion focused on access, interoperability and getting the underwriters what they need to assess risk.

Underwriters care deeply about making the correct assessments and are measured based on their ability to do so. They know that digital health data is creating a massive opportunity to more quickly and cheaply access information to enhance our assessments. BUT there are still many fundamental questions that remain that the panel attempted to unpack.

1) Do we really think that interoperability of electronic health data is improving?

Despite all the legislative hurdles, we have made significant progress regarding interoperability. Most aggregators are reporting release rates in the 45-50% range. If we go back 4-5 years, those numbers were in the teens or lower. Given the maturity of the product, a release rate in this range in a relatively short amount of time seems like a win to me. Note: Make sure that your data provider can clearly explain how their respective release rate are calculated. It is easy to get creative with this number (see my previous blog for a discussion on this topic). The chart below reflects MIB’s experience since mid-2020, which includes search activity for all use cases (e.g., new business age/amount or ‘for cause’ medical records, post issue audits, claim review, etc.).

2) Who controls access to ePHI (electronic personal health information)?

The Individual. The 2009 Health Information Technology for Economic and Clinical Health (HITECH) Act (HITECH) clarifies the 2000 Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule around personal health information (PHI) held electronically (see PDF). Under HITECH, an individual has the right to obtain a copy of their medical records in an electronic format when a Covered Entity (health plans, clearinghouses, providers etc.) uses or maintains an EHR. Additionally, an individual may direct the Covered Entity to transmit a copy of the of the record directly to the individual's designee. As such, the individual has control of when their PHI/medical record is used or disclosed for life insurance underwriting purposes.

3) How will TEFCA, QHIN(s) & IAS support data exchange?

First, let’s start with a very brief description of what each of these acronyms stand for:

TEFCA - Trusted Exchange Framework Common Agreement - The Trusted exchange framework describes high-level principles that networks should adhere to for trusted exchange.

The Common Agreement is a legal agreement that will enable network-to-network data sharing.

QHIN - Qualified Health Information Network - A network of organizations that work together to share data.

IAS - Individual Access Services - Services that enables individuals to access, control and management their own personal healthcare information.

The good news:

• TEFCA is promoting interoperability across healthcare with robust technical and security specifications ensuring high standards for data exchange in order for health information networks to receive a ‘qualified’ status.
• QHIN(s) have the potential to provide access to a large network of health data via a single connection.
• Individual Access Services (IAS) will assist in enabling patients (applicants) to access their own medical data and direct control of the information and how it is used.

The challenges:

• Our life insurance use case still has yet to be approved by TEFCA, and it unclear when that will happen.
• While IAS and QHIN(s) are promising access solutions for non-HIPAA consent form guided workflows, there is still some hesitation from our life insurance community as to how the services they will actually work. If feels as though many in the industry are taking a ‘wait and see’ approach.

4) How can carriers help drive applicant participation?

Continuous education is what will drive applicant participation, but that burden does not lie solely with the carriers. To be successful, everyone involved in utilizing or supporting a patient directed access workflow must participate in the ‘value’ based conversation with consumers. Operations leaders, Underwriters, Field Partners, and Tech Solution Partners all need to drive the educational component. Today’s consumers are not only selecting product options based on the lowest rates, they expect a fast decision process as well. Collectively, we must drive an understanding that if agents or consumers want a quicker decision, assisting in the authentication process in an IAS workflow will benefit them both.

5) Are we doing the right things as an underwriting community, in the right way, and who is looking out for our industry’s needs for data?

The truth is the responsibility lies within our entire industry (aggregators, carriers, reinsurers and tech solution partners) to be the voices of change. Collectively we need to educate data sources and healthcare providers about the importance of our use case (underwriting) in order to remove the roadblocks of access and interoperability and to continue to advance the trajectory of release rates to meet the needs of our customers. This is not an easy task…we are in this together.

Capturing the highlights of an hour-long discussion is challenging, but I hope you can glean a sense of the conversation and become part of the ongoing dialogue required to advocate for our use case. I left hopeful that bridging the interoperability gap between the systems that hold digital health data and our ability to access the critical information required to assess risk is improving. We have come a long way over the past 5+ years in terms of accessing electronic health data, as our graph shows. If you have an opportunity to join in on conversations to advocate for increasing access for our use case, please engage. The more voices we use, the faster we will close the remaining gap.