Unite to share data for best health

By February 10, 2019February 27th, 2019Advocate, Caregiver, Clinician, ePatient, Podcasts, Researcher

Data sharing improves health. But it’s difficult and unusual. Not sharing leads to error, wasted time, Can we could work together to make data sharing routine?

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Patient/caregiver stakeholder

00:51 I’m participating as a patient/caregiver stakeholder in an initiative about routine sharing of health data. It’s called, Generating Stakeholder Support and Demand for Leveraging and Sharing Data for Continuous Learning.  Who comes up with these titles? Communities working together to share data for best health or Unite to share data for best health

What is data sharing?

01:23 Right now health data is a commodity. Electronic health record (EHR) companies, hospitals, labs, device makers, clinician practices, all collect and store data about us.  They use it. They hoard it. They sell it. When the industry talks about data sharing, they are mostly talking about sharing it with each other.  When people (patients and caregivers, you and me) talk about data sharing, it’s sharing the data with us and members of our health team. Researchers collect data in their research. Data sharing for research means making the full data set available to other researchers. (See PCORI’s policy on data sharing).

Why have a data sharing initiative?

02:10 Data sharing is not the norm. It’s difficult and unusual.  It doesn’t happen regularly. There’s a limited business model for data sharing. Data collectors perceive that it costs them money to share it with each other or with us and others on our team. They see it as limiting their ability to make more money with it. They share it when required to by contract or law, sometimes. The National Academy of Medicine and the Patient-Centered Outcomes Research Institute sponsor this Data Sharing Initiative to transform the development of evidence and application of care innovation – for continuous learning. NAM and PCORI support creating new evidence (research) and innovation (new method, device, idea) in clinical practices. Many barriers to data sharing exist. These barriers are cultural, ethical, regulatory, financial, organizational, and design related (how people use data day-to-day). These barriers can only be chipped away in a collaborative fashion. Collaboration among patients and families, health care industry executives, and the research community. Hence this initiative.

Why is this important to me?

03:54 I want data about me to be shared with me and my health team so it can help me attain best health. I want aggregate data (lots of data about groups of people combined) shared for us all to attain best health. I’m sad to say that I don’t think that health data helps me that much right now. It’s great when my various health team members can see and share data about me so that they can coordinate and plan. But, other than my primary care physician who eagerly seeks health data about me, other members rarely get data about me created elsewhere or actually ever talk to each other. I mostly want data to be shared with me and others on my team to prevent worst health (as opposed to best health) and wasted time. Worst health comes from misdiagnosis, wrong treatment, overtreatment, under treatment, and ruinous debt. The opportunity lies mostly in correcting errors which can be many and reducing the time I spend fixing those errors, schlepping my health data from setting to setting, and trying to understand what is happening to me medically. One topic not discussed in the initiative: The impact of health equity on data sharing and the impact of data sharing on health equity.

What next?

05:32 NAM and PCORI will compile the output from these meetings of stakeholders to inform a public meeting and publish a vision of an ideal state of data sharing, describe the barriers, and recommend a path forward. They will write a book. I will author another blog/podcast about some of the barriers to data sharing and health equity issues.

Stay tuned.

Music by permission from Joey van Leeuwen, New Orleans Drummer, Composer

Photo by rawpixel on Unsplash

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Danny van Leeuwen

Danny van Leeuwen

Patient/Caregiver activist: learn on the journey toward best health

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