Are We Ready to Treat Patient-Generated Health Data?

This blog explores health informatics—a collaborative activity connecting people, process, and technologies to produce trusted data for better decision-making.


By Amanda Wickard, MBA, RHIA, CPHI

 

When I think about the amount of data I generate from my Apple watch—keeping track of the steps that I take, the calories that I burn when working out, my heart rate, and whether or not I meet my move, stand, and exercise goals—I know that I find it interesting and useful as motivation to beat my previous records… but does anyone else care about it? Other than one primary care physician who asked how many steps I had taken that day, no one has really inquired about my patient-generated health data (PGHD). When I started to look at what types of data that patients could generate, I discovered there is a vast amount beyond just what the Fitbit, Garmin, or Apple watch generate.

PGHD—gathered using digital health tools such as online questionnaires, personal health records, mobile apps, wearables, and connected medical devices—can help patients become more engaged in their own care or even take back their lives. PGHD helps those that have chronic conditions be able to manage better by being able to track, identify spikes, and report information in real-time. I recently read an article about an athlete that is 100 percent reliant on a pacemaker. Her pacemaker has the ability to monitor over Wi-Fi every heartbeat and rhythm, as well as the voltage and battery life. It also allows her to know when she is reaching an unsafe heart rate during extraneous activity and can report this instantaneously back to the patient and her doctor. I was amazed with not only the person’s story, but how much she relies on this data in her everyday life.

It’s remarkable the amount of data and information that one can create, but as PGHD is becoming more prevalent, several questions still need to be considered:

  • How accurate is PGHD? Is this information an automatic feed or is there human intervention that could skew the data? Can I mess with my weight values a smidge, especially after pasta night? Who is responsible for the accuracy and validity of PGHD?
  • What type of workload is going to be created for the provider and healthcare staff? Physicians have it tough now just keeping up with their patients. With this addition of data, does it hinder or enhance the care of the patient? One could argue that more data means more information, but if the provider doesn’t get a chance to look at it, then it’s not going to help anyone.
  • Can this information be integrated into the electronic health record (EHR)? Where does it belong, if it does make it into the EHR? How do all these different devices make it into all the different EHRs without some sort of standardization?
  • Who has the responsibility to act on the information that is coming across and at what point does someone need to intervene? This is a good question—the hope is that someone is keeping an eye on this information and would contact the patient when the numbers start to go south. But what if there is a delay? Is the physician liable?
  • The ultimate question in all HIM and patient minds alike is whether the information being shared is secure and able to be kept private.

The future is bright for patient-generated data; there are patients that would greatly benefit from the use of this data and collaboration with their providers. There needs to be a great amount of coordination in the efforts and guidance to ensure that using PGHD in the clinical setting is valuable, and to establish best practice efforts. PGHD has the ability to empower patients to actively participate in their healthcare and better manage their health outcomes. As we work together for increased coordination of care through patient engagement, a successful integration of PGHD into the clinical setting closes the gap just a little bit more on treating the whole patient.

References

Mitchell, Emily. “Patient-generated health data can be used to improve patient’s health – here’s how.” Mobi Health News. February 22, 2018. https://www.mobihealthnews.com/content/patient-generated-health-data-can-be-used-improve-patients%E2%80%99-health-%E2%80%93-here%E2%80%99s-how.

Sharp, John. “Effectiveness of patient generated health data in routine clinical care.” Personal Connected Health Alliance of HIIMSS. February 13, 2018.  http://www.pchalliance.org/news/effectiveness-patient-generated-health-data-routine-clinical-care.

HealthIT.gov. Patient-Generated Health Data. https://www.healthit.gov/topic/scientific-initiatives/patient-generated-health-data.

Office of the National Coordinator for Health IT. “Conceptualizing a Data Infrastructure for the Capture, Use, and Sharing of Patient-Generated Health Data in cAre Delivery and Research through 2024.” January 2018. https://www.healthit.gov/sites/default/files/onc_pghd_practical_guide.pdf.

Young, Christine. “How wearables and patient-generated data can improve healthcare.” Embedded Computing Design. December 2, 2016.  http://www.embedded-computing.com/embedded-computing-design/how-wearables-and-patient-generated-data-can-improve-healthcare.

 

Amanda Wickard is director of the HIM services department at Wood County Hospital.

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