It shouldn’t take patients to open data sharing

Image for Nadhan blog 8.19.16

I had the opportunity for an insightful discussion with John Santa and Amy Fellows from OpenNotes at the Red Hat Summit 2016. Santa was responding to my curiosity around the plausibility of technology being used to address some of the cultural challenges around open data sharing in the healthcare ecosystem.

We were seated just outside the movie theater at the Red Hat Summit where The Open Patient movie told the story of two brain cancer patients—Steven Keating and Liz Salmi—who, by accessing and sharing their medical data, are turning their crises into a movement. Santa outlined several ways technology can help open up the doors to unfettered access to patient data. Being a technology strategist at heart, I was definitely excited to see the multitude of possibilities. At the same time, I am also concerned that it takes motivated patients like Keating and Salmi to open the doors to data sharing. Nothing like employing technology to make the world a healthier place for patients in the future by simply sharing data. Join me as I walk you through the insights shared by Santa during our conversation.

OpenNotes is a national initiative working to give patients access to the visit notes written by their doctors, nurses or other clinicians. John Santa is the director of dissemination for OpenNotes and Amy Fellows is an associate for community health programs with OpenNotes.

Culture does not manifest overnight.  Culture is an evolution of systemic behavioral patterns by different personas that make up said ecosystem. The prevalent resistance to open sharing of data can be primarily attributed to:

  • Pains faced by the service providers and payers
  • Limited knowledge about the gains realized should data be shared.

Thus, technology (if and when introduced) will be most effective if it alleviates these pains and maximizes the gains.

Alleviating existing pains. The pains experienced and the manner in which the right technologies can alleviate them are described below.

  • Data accuracy. Inaccuracy of data wreaks havoc through its life cycle. Patient data, if not monitored and cleansed at the right time can be a matter of life and death depending on the nature of the inaccuracy. It could be the dosage of a medication, the time period over which it is administered, its frequency, etc. Business rules can be defined, implemented and automated to mitigate the possibility of such numbers exceeding predefined thresholds and raising timely alerts. Inaccuracies have also resulted due to human error in the wrong side of the patient’s body being operated on – right knee instead of the left knee! Technology can be used to scan the patient’s body to mitigate or prevent the possibility of such outrageous but inadvertent errors.
  • Data privacy. Caregivers are concerned about sharing some type of patient data like domestic abuse or mental health issues due to data privacy concerns. Technology can ease the way in which they can selectively mask such information so that they can control the information shared and never run the accidental risk of sharing private patient information. Such technological solutions can directly address the concern – I can share something but not everything!
  • Standardization of interfaces. There are myriad, proprietary ways of accessing information from disparate, proprietary systems and applications. Extracting such data, even if it is opened up can be frustrating since there is no one standard way of doing this. Technologies like API management can alleviate such pains and lay the foundation for a consistent experience when accessing data.

Maximizing Gains.  Introduction of technology can also introduce gains hitherto unrealized as detailed below.

  • Analytics. Good data realizes good information that can be used to improve the overall customer (patient) experience. Analytic tools can be injected into systems to identify patterns of behavior – for example, why is a given caregiver hiding 50% of the patient’s notes? Systemic recurrence of illnesses can be used to identify epidemics across a given geography. Historical data can be analyzed to identify statistical correlations that can open up new avenues for innovative solutions.
  • Synthesis. Valuable data is stored in multiple places including doctors’ hand written notes, appointments, and lab results. Technology can be used to read and process such data and connect the dots so that a more holistic picture about the patient emerges which paves the way for better treatment options.
  • Automation. Once the data is cleansed and the process validated, automation can work wonders. Automated tools are much more effective in identifying discrepancies than the human eye.

There you have it. Those are some of the ways that technology can open new doors for data sharing. But, technology is to no avail if the enterprises do not set aside the resources required, asserts Santa. The cost of making such technology available is a primary concern. So is the time from the IT teams who need to work on these solutions.

It takes Open minds to drive such change…minds like those of Stephen King and Liz Salmi as well as OpenNotes personnel like Santa and Fellows.

How about you? Are there other ways that technology can help open new doors for data sharing?  Please let me know.

Wishing open data the best of health!

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