This blog was originally contributed to the Health Data Consortium blog http://www.healthdataconsortium.org/ by HDC Consumers’ Circle member Francie Grace.
In this blog post, we speak to Travis L. Bond, founder and CEO of CareSync, as he hops in the time machine for a look at what the future could be for healthcare. Joining Travis on this journey is social media strategist Francie Grace, a member of the Health Data Consortium 2014-2015 Consumers Circle.
In the best of all worlds, how should healthcare data behave?
Travis: Logic is built into so many of our medical devices, EMRs and PHRs, and our daily lives are going to be more and more impacted by artificial intelligence and the Internet of Things - things connected to things, acting on live data streams. So it's essential that we figure out now what kinds of data behavior we want, and how we will provide solid enough privacy to allow wholehearted participation by patients and providers.
When an operating room computer is informed, for example, that an appendectomy is planned, should it check to make sure that this is a patient who still has an appendix? Does the patient have the symptoms an appendectomy is intended to relieve?
And how about the surgeon, nurses and anesthesiologist: what is their experience and success rate with this type of procedure? Is it at acceptable levels? How about the facility where the procedure is to take place? Should a person be swapped off the OR team because he or she isn't in the patient's insurance network, their experience isn't a good match, a check shows they couldn't have gotten enough sleep since their last shift, or are on a medication that could interfere with surgical skills?
How about the procedure itself and type of anesthesia: what have the success rates been for patients like this one, in facilities like this one? Can a patch monitor the patient's condition at home and order or halt an antibiotic or other prescription? Will outcomes data be fed to national and international databases to speed up clinical knowledge?
No one person or team can know the answers to all these questions, and certainly not in a timely manner. But machines can easily speed through this data at lightning speed. Time to connect the data and get it working for us, in a flow chart that makes sense to everyone.
What do you think it will take to get patients to routinely allow their data to be used as part of databases evaluating the outcomes of various clinical treatments?
Francie: The best way to address patients' fears about how their medical records might be used is to improve, and be very clear about, enforceable rules on privacy of health data. Once that's done, we'll be in good shape to move medicine ahead much faster, benefiting everyone as we deepen our knowledge of clinical options and outcomes, especially as they intersect with patients' individual characteristics.
The areas where patients must know the privacy of their data is paramount are:
- employers should not have access to employee health data, a situation which can spark health, age and other types of workplace discrimination;
- marketers should not have access to individual health data, unless it is anonymized (e.g., data showing that asthma is rampant in a particular region) or unless individuals have opted in (e.g., members of a rare disease community run by a pharmaceutical company which has disclosed that it may send various offers to members of the group);
- we should consider giving insurers only transactional access (as opposed to storing all medical claims indefinitely) to the data of policyholders, since the insurance industry business model can profit from denying patients' claims for reimbursement; and
- we need updated safeguards on the health data collected by local, state and federal governments.
What do you think should be done to improve the security of healthcare data?
Travis: The recent data breach at Anthem has appropriately turned up the heat on this issue but it's one we must handle as an industry. Encryption was being discussed; this might or might not be part of the solution. What type of security measures should be in place? Should it be one standard for everyone? There are experts on all these issues - in other industries and in government - and we need to tap their expertise.
Working with government and patient advocates, we can decide what the rules of the road are going to be, and provide meaningful sanctions - not just fines - for those who break them. Should this be self-regulation, or a matter of law? Cross the line, and it won't just be the cost of doing business: you'll be out of business.
Patients should not have to struggle to get possession of their health records, including doctor's notes, lab reports, and imaging DVDs: all of that information should arrive in a patient-accessible copy of the health record, as automatically as the electric bill and as speedily as the charge for a video you just bought on Netflix.
Giving patients a way to correct mistakes in the record is the simple but reliable secret to building patient trust strong enough to move ahead with more sophisticated collection and analysis of healthcare data. It's a civil rights issue to see and correct what people say about you. It's also good business.
Any other data use changes you envision from a patients' rights point-of-view?
Francie: It's a relief to see progress in patients getting copies of their records, but I won't be happy until it happens automatically and patients can easily flag errors for routine correction. I'm excited by the All Trials campaign to make the results of all clinical trials public. And I look forward to the day when healthcare datasets, including price and quality comparisons, are like many over-the-counter drugs and medical devices: a tool anyone can easily use.
In the future, personal health data collection devices will be able to link to public health and diagnosis databases offering help with everyday decisions and alerts on situations requiring a clinician. Doctors and nurses will benefit as routine matters drop off their list, freeing them to practice more often at the top of their licenses, in partnership with patients and others to identify and choose the best available options for clinical care.
None of this will be possible, of course, until we solve the data security issue, but I am confident that working together, considering the needs of the different stakeholders, we can get it done.
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