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Patient Access to Your Own Data: What Are You Looking For?


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Patient Access to Your Own Data: What Are You Looking For, and What Has Your Experience Been?

October 11th, 2013 - by Dr. Jack West

This week, my medical oncology group met with one of the hospital administrators working on our center’s roll-out of “MyChart”, the patient-focused side of our electronic medical record that is making it increasingly possible for patients to access their information, including chart notes, lab results, pathology findings, imaging reports — in other words, pretty much their entire medical record.

Historically, doctors have tended to be resistant to this idea for a wide range of reasons, including fear that this will facilitate lawsuits to concern that people will read in their clinic notes about them being “SOB” (short of breath) and misinterpreting it as being the better known non-medical version of an SOB. In pilot experiences, though, that have led to growing momentum for the “gimme my damn data” movement from empowered patients, those fears haven’t come to pass, and things continue to move toward greater transparency and access for to records.

Aside from patients simply wanting to know more about their situation, there are certainly practical reasons why any patient should want access to their information. I have reviewed a few medic0-legal cases of patients who were found to have a small lung nodule on an incidentally performed pre-operative or ER chest x-ray that was suggested to be followed up but slipped through the cracks, the patient then presenting with metastatic lung cancer 14 months after their incidental potentially early stage and curable lung cancer would have been detected. Any patient seeing that report would have been sure to follow up. As more tests are done more easily and doctors tend to perform “team medicine” covering a larger group of patients in less time, it’s all too easy for a critical piece of information to be overlooked or routed to a doctor who isn’t part of the regular team for that patient. The patient being able to review their own data provides a great safety net.

Of course, patients can also help chase down information and treatment options. While we might imagine that it’s feasible to rely only on the doctor to know and offer every treatment option available for a patient, cancer care has become so complex and specialized that it’s wrong to presume that any one person can know everything that could help a patient or every clinical trial that might be available. The patient and caregivers for them are likely to be the most motivated people, and they can potentially spend far more time doing deep searches for specific information that even the most dedicated oncologist can’t do when they have many patients to care for.

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