CRA-I Blog

The CRA-I Blog frequently shares news, timely information about the computing research industry community, and items of interest to the general community. Subscribe to blog emails here to stay connected.

Navigating the Landscape of Healthcare Data Sharing: Insights from CRA-I Roundtable

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In a recent virtual roundtable discussion hosted by the Computing Research Association – Industry (CRA-I), industry experts and professionals convened to delve into the complexities and opportunities surrounding the sharing of healthcare data. The event, moderated by Divesh Srivastava from AT&T, featured insightful contributions from Margarita Gonzalez (Georgia Tech Research Institute), John Kansky (Indiana Health Information Exchange), and Tammy Toscos (Parkview Health). See the full recording here. 

The conversation highlighted the transformative potential of healthcare data sharing in today’s rapidly evolving healthcare landscape. As a force with the capacity to revolutionize patient care, research, and policy-making, it has become a crucial endeavor. However, the discussion acknowledged the myriad challenges, ranging from privacy concerns to interoperability issues.

Margarita provided valuable insights into the multifaceted nature of sharing healthcare data, emphasizing its role in military healthcare resilience and readiness. She touched upon different dimensions of wellness and health, including key aspects such as psychological resilience, mental wellness, and their connection to overall health. John Kansky shed light on the evolution of local health information infrastructure, emphasizing the importance of data quality. He highlighted the standards in place and the need for data to conform to these standards, ultimately focusing on supporting patient treatment. Tammy Toscos, situated between the realms of Margarita and John, discussed her lab’s work with public health data and qualitative data integration. While utilizing electronic health record data for research and support systems, her team emphasizes social science and human-centered design in their core research areas.

As we navigate the intricate landscape of healthcare data sharing, the insights from this CRA-I roundtable can serve to guide stakeholders from academia, industry, government, and medical practice towards collaborative solutions. The challenges are acknowledged, but so too are the transformative possibilities that lie ahead in reshaping the future of patient care, research, and policy-making. It is clear that there is more to discuss as a community in this space. CRA-I will be hosting an in-person workshop in this area in 2024. Please stay tuned and reach out if you have any questions, comments, or interest in participating in the in-person workshop. 

Establishing Partnerships with Industry at CRA-WP’s Career Mentoring Workshop 2023

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People sitting at tables watching the panelists present. In November, CRA-Industry (CRA-I) had the honor of delivering a plenary talk at CRA-WP’s 2023 Early & Mid Career Mentoring Workshop in Chicago, IL. The speakers, CRA-I’s Co-Chair Vivek Sarkar (Georgia Tech) and Cynthia Bennett (Google), presented on “Establishing Partnerships with Industry at CRA-WP’s Career Mentoring” and sparked vibrant discussions with the audience.

The speakers underscored the immense value of informal interactions like coffee chats at conferences and workshops. Emphasizing the impact of organic conversations, Cynthia shared an inspiring academia-industry collaboration that originated from a casual chat and evolved into a joint publication. Such partnerships not only facilitate resource-sharing and funding but also encourage exploration of broader research questions.

The conversation delved into the significance of virtual mentoring sessions, particularly for first-generation students. Teaching students effective interaction with industry, these sessions create a bridge, providing students access to industry insights and vice versa. The potential for enhancing the computer science curriculum through industry collaborations was also highlighted.

While building trust among stakeholders demands time and commitment, the result is a collaborative culture that propels the computing research community forward. The discussion echoed a shared recognition within the community for more collaborations between academia and industry.

CRA-I and CRA stand ready to support and promote these collaborations. For suggestions or questions, reach out to industryinfo@cra.org. Together, let’s advance the synergy between academia and industry in computing research.

CCC and CRA-I Respond to NIH RFI on Developing Consent Language for Research Using Digital Health Technologies

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The following post was originally posted on the CCC Blog, by CCC Program Associate Haley Griffin. 

Yesterday, the Computing Community Consortium (CCC), in collaboration with CRA-Industry (CRA-I), responded to a Request for Information released by the National Institutes of Health (NIH) on Developing Consent Language for Research Using Digital Health Technologies. The following CCC Council Members and CCC staff authored the response: David Danks (University of California, San Diego), Haley Griffin (Computing Community Consortium), Katie A. Siek (Indiana University), and Pamela Wisniewski (Vanderbilt University). CRA-I Council Member Tammy Toscos (Parkview Health) is also a co-author of the report.

NIH provided informed consent sample language that they plan to release as a voluntary guide for researchers that use digital health technologies, and sought feedback from the community not only on gaps or additional concepts that should be included or clarified in the language itself, but also on any barriers the community could identify that would inhibit its widespread use.

CCC and CRA-I’s response proposed several improvements to their recommended language, including:

  • Identifying who is responsible for paying for cellular data/internet connection.
  • Explaining what constitutes a “medical device” versus what does not.
  • Providing more specificity and/or customization for each item, as technology should not be voted as a monolith.
  • Describing in more detail on how AI is used in the system, and how inferences from the data may be used/shared.
  • Creating a brief training for establishing baseline competencies.
  • Explaining how their data is going to be tracked, transformed, cleaned, and processed.
  • Differentiate between treatment/intervention versus data tracking/monitoring.
  • Handling with care the different consent and procedures for children.
  • Addressing “dark patterns” (e.g., Opt Out, nudges to consent) for obtaining consent for research as a prerequisite to receiving medical treatment.
  • Clarifying whether and how the data is protected by HIPAA.
  • Noting explicitly what data participants can ask to be removed and what data they can not (and what data the researchers own vs. a 3rd party).
  • Explaining risks related to child mandated reporting status of the reseachers (e.g., child abuse, sexual abuse, imminent risk of harm).
  • Providing an external and unbiased point of contact in case of harm.
  • Clarifying that the research team may withdraw them from the study if the participant no longer qualifies.
  • Explaining that withdrawal will not adversely impact their standard medical care as provided prior to entry into the study.

The authors of the CRA response also noted that sometimes template language like this can manifest into required protocol without care being put into making sure it works for the study, and it is important to not require it as a blanket statement if it does not apply directly to the research.

Read the full CCC/CRA-I response here.