Completing the Picture: The Value of User-Generated Health Data Streams

The healthcare industry is undergoing a dramatic and necessary transformation. Empowered patients are taking action and participating in their own healthcare, marking a significant change from the long-standing paternalistic relationship between physician and patient.  Underlying this transformation is a new found access to health information via the internet and personal health data via consumer health devices and applications.

Much has been written about this long coming transformation, which has spawned the Health 2.0 movement, a successful conference series of the same name started by Mathew Holt and Indu Subaiya, the peer reviewed Journal of Participatory Medicine and a series of grassroots unconferences championed by Mark Scrimshire.

To date, many have focused on the challenge of digitizing the vast amounts of health data in the current health system and on the one-way transfer of existing data from the system to the patient via EMRs and PHRsGoogle and Microsoft have launched data warehouses for personal health information, and a few large institutions have embraced this one-way flow of information. The Mayo Clinic recently partnered with Microsoft HealthVault to provide patients access to their medical records, and Kaiser Permanente has been very successful with their “My Health Manager” offering.

Providing access to health information and health data is a logical first step.  The foundation of the modern health industry is health data.   Each time a prescription is dispensed (3.8 billion times in 2007), a medical claim is submitted, or a lab is ordered, a piece of personal health data is generated.  Evidence-based treatment guidelines often focus on specific health data values, such as BP, LDL or HbA1c, for treatment recommendations.  And a modern medical record is simply an aggregation of health data generated at the point of care, including patient reported symptoms, diagnoses, treatments, test results, physician commentary and observations.  However, medical records are punctuated data streams with large gaps in data from time periods in between physician visits.  It is the doctor’s difficult job to fill in these gaps with imperfect information recounted by the patient to complete the picture and treat the patient effectively.

Focusing only on the EMR, or the one-way transmission of personal health data from the system to the patient, misses half of the health data equation.  With increasing frequency, patients are beginning to generate and report their own personal health data.  Sites such as CureTogether and PatientsLikeMe are collecting patient reported data, analyzing the data and generating valuable services for their members.  And recently, we have seen a rapid rise in ‘health trackers’ to record health and wellness information (MedHelp, TheCarrot, DailyMile, hLog, Polka, Ringful).  Data is also being collected and uploaded in the home by personal health devices such as BP monitors with SD cards, WiFi weight scales, USB glucose meters and activity monitors, some now sold at Best Buy.  To date, these patient generated data streams have existed in silos, both disconnected from traditional data streams generated within the current health system and from data generated on other sites.

In the future, each individual’s traditional health data stream (EMR) and user-generated data streams will merge into one personal health data stream, or healthstream, and this healthstream will be owned solely by the patient.  Diagnoses, treatment decisions and lab results will be overlaid on top of more frequently added data from the patient including symptoms, adherence to medication, daily weight, diet, mood, activity levels, sleep patterns, etc.  This complete longitudinal data stream will be valuable to both the physician and patient and become a part of everyday medical practice.  Physicians will prescribe trackers, apps and home health devices, along with their standard Rx, and will receive a report at the patient’s next visit.  Rather than relying on recollections, physicians will have more complete pictures of their patients, and patients will begin to feel like partners in their own care.

This longitudinal healthstream will become a valuable asset for the patient, and will increase in value with each added data point.  Patients will have the right to grant permission to use all or part of their healthstream for medical care, for research and discovery, or even for profit.  I will explore the topics of permission and use of the healthstream in future posts.

For another view of the future of the healthstream, see Dr. Vijay Goel’s post “HealthStreaming: What data would you need in your stream to make your health decisions?”

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6 Responses to “Completing the Picture: The Value of User-Generated Health Data Streams”


  1. 1 lindsaymeyer February 8, 2010 at 8:51 am

    I’m not nearly as plugged into these ideas as you are, but I’d love to see more economic data concerning the application and infrastructure necessary for sweeping change like you’re describing. What’s going to convince private payers to get onboard when industry costs are increasing exponentially? Also, what other forward thinking countries have already beat us to this?

  2. 2 employees health and safety responsibilities January 17, 2015 at 5:34 pm

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  3. 3 healthguru January 30, 2016 at 4:40 am

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  1. 1 Patient-Reported Data: FDA Cares, So Should You « Citizen Medicine Trackback on February 28, 2010 at 4:22 pm
  2. 2 患者エンゲージメントは21世紀のブロックバスター薬 米国政府CTOトッドパーク博士 | 九州医事研究会 PHR(Personal Health Record)Workshop Trackback on September 8, 2014 at 4:45 pm
  3. 3 forum.christiantietze.de Trackback on March 26, 2015 at 11:18 pm

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