Discussion around data-sharing has never gone off the table. From questioning whether there is an ethical way to do so; if patients will be more motivated to share shall they know it is for a good cause, to the possibility of individuals recognizing themselves via their personal details; exploring new sharing protocols, strategies to keep patients on board and most recently, users are forgoing Fitbit fitness trackers for Apple smartwatches as they fear their health data will be subjected to mishandling. All these not only signify a new wave of “data-awakening“ among patients but also an important reminder to both developers and healthcare providers that no stakeholder is negligible from this moment on. 

Patients are not accessing their health records

Interestingly, a new study revealed only 10% of hospital-discharged patients who have online access to their health records, will actually view, download or transmit them. A group of researchers from the Oregon Health and Science University-Portland State University, University of California, San Francisco and Zuckerberg San Francisco General Hospital analyzed data collected from more than 2400 US hospitals between 2014 and 2016, to examine the relationship between patient- and hospital-level characteristics and use of electronic health record (EHR) records among discharged patients. 

They found that of the 95% of discharged patients, only one in 10 of them granted access to their EHR, will actually view their data. It is even less likely for individuals without computer nor internet access at home to view their EHR after they have been discharged. Access rates are highest among large teaching hospitals or hospitals which are member of a larger health institution and lowest among non-profit hospitals located in counties where residents mostly require additional medical subsidies. 

Researchers attributed disparities in healthcare resources as the cause of such digital divide and encouraged a better policy or a better policy incentive to engage more people. A separate group of researchers from Australia believes an engaging patient portal will help to facilitate patients’ access to EHR and improve patient-provider communications. Overall, based on a health tracking poll conducted at the beginning of the year, most people are aware of EHR and they do not feel it has worsen their clinical experiences. The older the patients, the more concern they show towards unauthorized other who can access their health information. 

Unshared clinical trials and poor quality of data 

On the other hand, after reviewing study results reported on ClinicalTrials.gov over the past decade, some researchers found most academic institutions and drug companies not only failed to report studies involving human, but the quality of data that has been submitted also posed questions. This coincide with an analysis of similar nature published this March, indicating some of the most prestigious institutions in the US are not disclosing clinical trial results over the past two years, despite federal requirement. 

The decade-long review study also found that institutions often upload inconsistent data especially when measurements and units are concerned. Others may not to include study time frame or details that showcased a very poor quality of clinical research records. Insufficient report of human clinical trials and related are now putting a strain on transparency. As the review study noted, ClinicalTrial.gov tends to be the one and only place where clinical trials data and results are being formally shared. The data will be checked by staff at the National Library of Medicine along with the National Institutes of Health, before they are being posted. As such, failure to share clinical trial results and related data onto a platform like this, makes it hard to fact-check whether the institutions did alter their data before submitting to an open-source publication. 

Author Bio
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Hazel Tang

A science writer with data background and an interest in the current affair, culture, and arts; a no-med from an (almost) all-med family. Follow on Twitter.