Recap: The Right Data, The Right Decisions - Why Patients Need Access to Their Health Information

Aidan Scott Aidan Scott | Last Wednesday at 6:24 PM
#thinkdigitalhealth Digital Health Week #hcldr

Although a one-hour twitter conversation didn’t solve the many challenges facing digital health, it served as a vital pulse check to uncover the barriers we still face. At the heart of those issues is a question of data management and access. Framing the discussion was this thought, “The right data, the right decisions: Why patients need access to their health information.”

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After reviewing literature 1,2,3 from as far back as 2006, the reasons for you to have access to your health data are quite clear, so what’s the hold-up? Let’s let the internet tell us, here’s what trended during last night’s conversation.

Health Literacy: Accessible health data can’t require a degree to understand.

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“Collaboration is critical. Asking questions is a must. Access to info is essential to begin scratching the surface of coordinating ones care, making educated decisions. Let me know if I may be of any help.” - @GraceCordovano

“On the flip side, I wonder if there's a way to simplify the language used in healthcare so it's not as jargon filled in order to increase health literacy.” - @cristianliu

Referrals and Scheduling: People should never fall through the cracks when accessing health services.

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“Holy cow.... yes this.. rn referrals go into some unkown black box. We should know sent/received/waiting/triaged/appt.” - @seastarbatita

Design: If what we build isn’t usable by the most vulnerable, it’s not good enough.

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comprehension. Usability. Because, really - how we got this far without UX is mind boggling. - @MannZiva

Not enough people are talking about design in digital health despite numerous articles talking about physician burnout from cumbersome, inefficient technology. Efficiency comes through design, and accessibility is possible through good design.

Value: Many questions on who benefits and who should pay for public access to health data.

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“Who sees this increase in value add? Patients, HCOs, clinicians, payors, or other third parties? Giving access and claiming ownership are very different things. Do we want ownership or access? Which is determined by who pays unfortunately.” - @MarioATX_MD

Research shows the public and health systems can both benefit from digital health. However, innovation needs financial support. In a public system like Canada, specific funding allocated for digital health is necessary. Health access can save lives and improve health outcomes, and it should never become a luxury item. To learn more about the shared benefit read this report provided by Infoway here.

The future of digital health can’t be decided solely by those within the system; public input is necessary. To achieve a person-centered system, humility to admit we don’t have all the answers can create open spaces for a new dialogue to come forward. The path ahead may still be uncertain, building for the most vulnerable and focusing on access to literacy, scheduling, design, and data is a good start.