December 16, 2014

Patient Engagement Is Backwards

This was a surprise when I read this about patient engagement! Finally, someone that felt similar to what I thought about patient engagement and a doctor to boot. This is worth quoting - “This drive for patient engagement often fails to recognize one important truth: Our healthcare system inadvertently, yet potently, discourages engagement. It ignores the fact that the patient is already the most engaged person in healthcare. The patient bears the disease, the pain, the scar – and, ultimately, the bill. In our search for greater engagement, we must realize what the comic strip Pogo said years ago – “we have met the enemy, and he is us.””

Yes, our healthcare system discourages patient engagement by discouraging honest, straightforward communication. Many doctors also patronize us and feel they are the only source of information we, as patients need. They talk at us instead of with us and many belittle us because they don't receive the information from us that is already in their records and they are too lazy to look up, or are not accessible because one electronic record will not communicate with another electronic record. HIPAA is often blamed, when it is the proprietary electronic systems that are to blame.

Physicians expect patients to bring test results to an appointment – because patient information is often not shared throughout the complex and fragmented systems. Patients are expected to remember their entire health history, and repeat it ad nauseum, because the unconnected systems fail to share. Patients are expected to recount the complex names of the all the drugs they are taking, and at what doses. And it’s not uncommon for these questions to be asked many times in a single hospitalization, during outpatient visits, and again each time a patient encounters a new caregiver.

The Office of the National Coordinator for Health Information Technology reports that one in three patients experience gaps in information exchange, which we rely on the patient to solve. This number may be a significant underestimate because physicians are so used to this level of fragmentation and repetition, that they no longer see it for the system failure it is.

In reality, patients have no choice but to be engaged. They are provided these details in an inefficient way that causes a lot of frustration, worry and fear on top of already stressful medical concerns. Physicians need to think less about the patient being more engaged, and focus on how they can simplify, encourage, and automate engagement tools on behalf of the patient. People are accustomed to integrated, automated, 24-hour customer service in almost every other industry.

Yet, when it comes to the patient's most important asset – health – the consumer experience is dependent on fax machines, scribbled notes, hand-carried printouts, and the memories of those most in need of care. If our healthcare system were to implement the automation, connection and coordination that other industries have used to change the face of consumer engagement, boosting patient engagement wouldn’t be an issue. Physicians would instead be easing the burdens on the very patients they are trying to help.

I can honestly say that as a patient with diabetes the physicians in this area cannot access my records unless they are in the same practice and this is very discouraging and I have to keep banging my head against the errors in the different medical records – and believe me – each electronic medical record has errors and try as I have, none of them have been corrected. What is scary is that some of the offices have refused to correct the errors that even they know are in error.

The article used an example of how concerned parents figured out how to hack into their diabetic children’s glucose monitors so they could remotely track their blood sugar levels. I know other heart patients that have tried to obtain information from heart monitors, but could not because the data was only supposed to be accessible to doctors with the right equipment. Hacking turned out to be the only solution. Should something so essential to managing a loved ones’ health or one's own health require it to be hacked to make that data accessible? I think you know my answer.

We, as patients, need to improve how the healthcare system engages with patients by demanding the various technologies used to take care of us talking to each other. Additionally, we need to demand transparent pricing information or we won’t succeed in receiving better individual care, or lowering costs.

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