#ONC2015 Wen Dombrowski moderator of a panel to discuss Big Data. Panelists:
- Moderator: Wen Dombrowski, M.D., Aging, Healthcare, Technology, and Social Media Advisor, Resonate Health LLC (@HealthcareWenWeb Site Disclaimers)
- Annie Fine, M.D., Medical Director of Data Analysis and Reportable Disease, Surveillance Unit, New York City Department of Health and Mental Hygiene
- Ivor Horn, M.D., Medical Director – Center for Diversity and Health Equity, Seattle Children’s Hospital (@DrIvorHornWeb Site Disclaimers)
- John Mafi, M.D., Fellow, Internal Medicine, Open Notes and Beth Israel Deaconess/Harvard Medical School (@BIDMChealthWeb Site Disclaimers) (@myopennotesWeb Site Disclaimers)
Q: What are the opportunities and challenges with collecting Data:
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.
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.
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.
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.
Exploring Twitter and Yelp to identify food-borne outbreaks.
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.
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:
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.
Better access to data in EHRs to help in Population Health analysis.
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
We need to think about the return on Investment for the person sharing their data. This opens up issues of trust and community contributions.
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?
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?
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.
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.
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[tag health cloud, blue button, ONC2015]
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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.
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