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Meaningful Health Care Informatics Blog

Oct 9 2011   10:12PM GMT

Can patient information one day be sold?

Posted by: RedaChouffani
Data mining, Data privacy and security, EHR adoption, HIPAA, Patient privacy, Population health

No one can argue that there has been a recent increase in the adoption of electronic health records (EHRs) in both the hospital and outpatient settings. As those in the industry are well aware of by now, this has been mostly due to the federal incentives put in place through the ARRA and the HITECH Act, with one of the requirements, or measures, of the program being the actual exchange of health data and information criteria. This applies to both certified EHR solutions as well meeting meaningful use.

We are also seeing a trend of health data starting to converge and become more centralized across large health systems. This has created large data repositories of health related data.

When reviewing the advantages of adopting electronic medical records, the most significant value that comes to mind is the use of digital information to help improve patients’ health and save lives. But there have been prolific results that go well beyond that when using electronic charts, such as cutting costs, improving efficiencies and outbreak detection. But as organizations begin and continue to utilize patient information to improve care, there are many entities and organizations that would potentially benefit from accessing the bulk of this information.

What we are talking about here is the ability for the data banks of health records to be used for purposes other than patient care. While health care organizations are required to protect health information under HIPAA’s regulations, it is hard to ignore how other industries could potentially benefit from accessing this data and what they could do with it.

Some of the examples of different uses of patient health information databases are:

Clinical trials:

Drug makers spend millions of dollars each year to recruit patients for clinical trials. There are many factors that impact the costs for clinical trials, some of which are the cost of advertisements, medical documentation, health assessments, labs, and physicians visits. The selection process for the appropriate candidate is complex and costly for research firms, and this unfortunately has a direct impact on the costs of drugs, which are then transferred to payers and ultimately the patients.

But many clinical trial firms recognize that, with access to large health systems’ databases, they can potentially have the ability to identify much quicker the appropriate candidates for their research. This can be done in two ways, with one option being to proactively flag patients that maybe good candidates for a new treatment during the visit and alert the physician of the newly available treatments. The other option would be to have a report generated by the health system based on predefined criteria and submit a patient list to the research firms, who would then contact the patients.


Pharmaceuticals and drug manufacturers:

For many drug makers, the Internet has been one of the best marketing tools available. It has extended their reach and has been the tool to derive the highest ROI. But while it has not been necessary for the advertisers to touch the intended audience every time (spam emails, pop-up ads, and the like), drug makers are continuously looking for new ways to fine-tune their marketing and advertising machines.

Right now, it is common practice for physicians to recommend specific drugs for certain conditions. However, we are seeing more and more of patients requesting certain brands for their conditions now, or self diagnosing the problem. This has only increased along with the high number of TV ads for drugs which highlight the effects and “healing” ability of their product. But if drug makers have access to actual patient charts, this will provide them the ability to target patients with specific conditions, as well as patients using a competing drug, and send targeted ads to fitting candidates. Unfortunately, this will most likely cause some heart burn for physicians, too, who have to spend more time explaining why one drug is not a proven, better option vs. another that a physician prescribed.


Scientific research:

It is without a doubt that EHR provides access to an unprecedented amount of clinical information. Through research, this data can help accelerate the level of knowledge and efficacy of medical treatment. The VA is just one system who has voiced their interest in providing full access to scientists and other entities to the unidentified patient information. The intent is to have one of the largest patient clinical databases in the world that can be used to further improve population health and define effective treatment plans for certain conditions.

Employer health and human capital:

Most large employers can’t ignore that health care costs are rising at an alarming rate. This means that they will need to continue to identify creative ways to recognize savings and work to cut costs. Currently most employers do provide some incentives for employees who are enrolled in wellness and/or nutrition programs.  And while employees are usually incentivized to work hard through performance reviews and other such measures, access to an employee’s health information can open the door for employers to review the health and progress that employees make while managing their health. Employers can then create incentives for employees (patients) to maintain a healthy lifestyle by simply tracking specific measures within their health record. There are, of course, privacy concerns that would need to be addressed; however, access to a limited amount of information can be useful to reward everyone, including non-smokers and patients who lead actively lead a healthy lifestyle.

Clearly there are more values that can be draw from the use of the electronic health information and making the data available to a larger degree (with specific terms and conditions, of course). Companies like Google, Facebook and LinkedIn already use similar tactics to track their members’ browsing habits and preferences in order to deliver specific, targeted ads online, which had a significant increase on the effectiveness of their campaigns. Health information, however, is protected under the HIPAA law, and using that information for use other than improving patient care will receive tremendous resistance and scrutiny from the public. My main bit of advice then is to proceed, but with caution!

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