Monday, February 02, 2015

#ONC2015 Collect Big Data and Health Information to Improve Population and Public Health (

#ONC2015 Wen Dombrowski moderator of a panel to discuss Big Data. Panelists:

Collect – Big Data and Health Information: Improving Population and Public Health (International Ballroom)

Q: What are the opportunities and challenges with collecting Data:

Ivor Horn

Working with underserved patients and families. Big challenge is identifying what matters to improve their health. eg. Limited understanding of preferred language and seeing that is recorded in the records.

Annie Fine

Get most data from labs rather than providers. Data is non-standardized. Needs lots of human intervention to keep data flowing. Annie gave an example of how geo-coding and data collection enabled the spread of legionella in New York to be contained and resolved.

John Mafi

Working on Opennotes. Patients forget between 40 and 80% of what they have been told by the doctor. Most of what they remember is factually wrong. Open Notes give patients better control and also better medication adherence. Leverage transparency to improve medication adherence. When patients enter their own data they are more likely to be both truthful and accurate. When patients contribute to the plan for their health they are more committed to the outcome.

Looking at how to streamline the process for clinicians.

The latest evolution is “OurNotes” – Patients contributing to their own health record. Pre-visit the patient enters data through secure portal or iPad tablet.

Ivor Horn

We need to think about how patients with a non-englsh language as their first language can participate in their Health Record.
How do providers get outside their four walls to engage in health.

##Annie Fine

Exploring Twitter and Yelp to identify food-borne outbreaks.

John Mafi

How do we tackle the digital divide? We need to improve the outcomes for non-white populations. There are no policies that promote removing health disparities for the under-served.

Preliminary results indicate that non-white populations are just as likely to review their notes in the Open notes study. We also need to engage the caregiver proxies.

Annie Fine

We need better data. Even simple data, such as where they live, are they employed. Working with HIEs to find people with Hepatitis C that aren’t in care.

HIE can exacerbate the digital divide if we are not careful.

Q: What data would you like to see and what are the barriers or unintended consequences if not collected:

Ivor Horn

Within the Health Care System – Safety extends beyond the four walls of the medical place and are we tracking the resources that patients can access when they leave. We need data for the full continuum of care. Accessible to the medical professional and the patient and their family.

Providers think about Panel health and not real population health.

Annie Fine

Better access to data in EHRs to help in Population Health analysis.

John Mafi

Including the patient’s voice in their care. Providers are measuring what is easy. There are few things where one size fits all. Preference sensitive issues are becoming more prevalent.

Most treatments don’t match patient values.

Wen Dombrowski – Food for thought:

We can use passive collection of data from smartphones and devices. eg. Phones know our location. Geo-coding has tremendous opportunity for enrichment of data.

We need to look beyond the fear of data and see how we embrace it. Great question from Ross Martin

Ivor Horn

We need to think about the return on Investment for the person sharing their data. This opens up issues of trust and community contributions.

John Mafi

Great idea from audience on looking at voice input for those challenged with health and computer literacy.

When Geisinger stopped the push invitations to patients to read their notes the rate of engagement plummeted to about 10%.
In “Our Notes” focus will be on multiple conditions.

Q: 30% of population is illiterate – how do we cater for this?

Ivor Horn

Patient Navigator programs help patients and families navigate the health system. Providers aren’t used to patients taking the lead in managing their health. The digital age will encourage more engagement and change the paternalistic system of health.

Q: Opt-in and Opt-out of data can lead to inconsistent picture. How do we address this issue?

Annie Fine

In NY Public Health has access to patient data for a population overview. No capability to query large datasets.

Q: Open Notes allows patients to identify and correct errors in their records.

John Mafi

One of the challenges is getting patients over the fear of challenging their clinicians when corrections are needed. Inviting patients to become stewards of their own record. There are huge challenges because of health illiteracy etc. We need to use navigators, proxies and other means to help patients review and correct their health record.

[category News, Health]

[tag health cloud, blue button, ONC2015]

Mark Scrimshire
Health & Cloud Technology Consultant

Mark is available for challenging assignments at the intersection of Health and Technology using Big Data, Mobile and Cloud Technologies. If you need help to move, or create, your health applications in the cloud let’s talk.
Stay up-to-date: Twitter @ekivemark

I am currently HHS Entrepreneur-in-Residence working on an assignment to update BlueButton for Medicare Beneficiaries. The views expressed on this blog are my own.

I am also a Patient Engagement Advisor, CTO and Co-Founder to Medyear is a powerful free tool that helps you collect, organize and securely share health information, however you want. Manage your own health records today.
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