'Bring your own data' is the next trend in healthcare

Clinicians need new skills as more patients carry their own health information into appointments.
By Bill Siwicki
10:32 AM
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Anupam Goel has a big prediction: More and more patients will bring their own medical data into appointments with doctors and caregivers. 

Goel, chief medical information officer for Advocate Health Care, a 12-hospital health system in Illinois, is not alone in saying that such a consumer movement is percolating. 

Sanford Health said it will incorporate as many data sources as possible into its enterprise data warehouse, according to Doug Nowak, senior executive director of enterprise data and analytics. “I would more than welcome additional data from patients,” Nowak said. 

Same goes for Mohammed Saeed, MD, a cardiologist at the University of Michigan Medical School.  

“Increased patient ownership and autonomy over healthcare data is inevitable,” Saeed said. “Mobile devices such as cell phones and activity trackers contain invaluable information.”

"Providers are enabling self-collected data with the enterprise pop health back-end to continually engage and encourage improved health behaviors."

Natalie Hodge, MD

The consumer movement

Natalie Hodge, MD, said that she has seen patients seeking health information since the days of AOL, then Google, with some even bringing in reams of content about a specific topic. 

“Now we have the consumer movement,” said Hodge, Chief Medical Officer and co-founder of PreventScripts, a startup focusing on preventing health issues. “Providers are enabling self-collected data with the enterprise pop health back-end to continually engage and encourage improved health behaviors.”

The American Hospital Association found in research published this month that patient-generated data and customized services are top among the areas where healthcare organizations are investing in innovation today  -- with the aim of improving patient experience and managing high-cost populations. 

Another investment priority that AHA found are the digital technologies for creating virtual networks that can be harnessed to connect clinicians with surrounding communities. 

It’s not just wearables and fitness trackers, either. A range of tools, including Hodge’s technology for preventing disease in at risk-patients, are emerging. EHR maker Epic in mid-September launched Share Everywhere, an interoperability tool that patients can use to grant caregivers one-time access to their data and, in turn, clinicians can send updates back into the MyChart portal. 

Cedars-Sinai posted a new app for the Apple Watch that patients can use to find a doctor, connect to clinicians, schedule appointments, access their medical record and check lab results. 

That’s just in the last month. The digital health landscape is peppered with apps and devices that could be used to improve outcomes. 

"I expect there to be software that would be a combination of natural language processing with monitored and unmonitored algorithms to identify themes to track by disease and specialty."

Anupam Goel, Advocate Health Care

New skills clinicians need now

Advocate’s Goel said the consumer movement will mean that clinicians and health systems must master new skills to rapidly and accurately review and make sense of that patient information because it won’t be stored within a single EHR.

Clinicians will need to be able to parse content within a variety of data formats, including PDF, CCD, free text and others, for instance. They also will need to be able to cluster disease-specific and specialty-specific information together for review, Goel said.

Another skill to master is the ability to incorporate user-level information to customize what elements surface when reviewing charts from other patients based on what the user has reviewed from similar patients in the past, Goel added.

University of Michigan’s Saeed explained that physicians have to learn how to factor data about, say, daily activity levels, weight and heart rate trends into an assessment of patients’ health and quality of life. 

Exactly. In this new paradigm, where patients are carrying around data in different formats from different healthcare organizations, how does a caregiver quickly and easily determine which data are relevant and which data are not?

“I expect there to be software that would be a combination of natural language processing with monitored and unmonitored algorithms to identify themes to track by disease and specialty,” Goel said. “The clinician would rely on the software to minimize errors – data unintentionally included or unintentionally excluded.”

Healthcare organizations and clinicians also need to tame the various V’s of Big data, which Goel listed as volume, velocity, variety and veracity. 

“If the clinical content is available in free text or a consistently tabular format, natural language processing with disease and specialty overlays could help manage volume and velocity,” Goel said. “Variety may be more challenging, but as new data formats arise – for example, images, movies, etc. – additional rules could be written to help manage the information.”

Empowering patients

Sanford’s Nowak said the consumer movement will continue and grow as patients gain more access to their information. 

"We definitely are seeing evidence of patients demanding greater access and portability of their data,” said Blain Newton, Executive Vice President of HIMSS Analytics. 

Hodge added doctors that always face the next big thing when it comes to practicing medicine. 

“Prevention Management is the new realm here,” Hodge said. “Now it’s enabling patients to self-manage primary prevention.” 

Goel and Nowak will be speaking at the HIMSS and Healthcare IT News Big Data and Analytics Forum on Oct. 23 to 24, 2017 in Boston. 

Healthcare IT News Editor-in-Chief Tom Sullivan contributed to this report. 

Twitter: @SiwickiHealthIT
Email the writer: bill.siwicki@himssmedia.com