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Patient Generated Health Data, Ensuring Full Information at the Point of Care

October 5, 2023

An asthma patient uses her wireless inhaler with built-in monitoring capability. When she is done, the device immediately communicates wirelessly and automatically through a transmitter installed in her home, and sends her data, via a landline telephone connection or by the GSM network, to a secure database in her physician’s office. Her physician receives an SMS, (short text message), email, or fax to review the data on a secure webpage. (1)

This is Patient generated health data (PGHD), clinically relevant health information captured by patients, outside of the traditional care setting, in their home, or on the fly, for example, when walking, running, sleeping, exercising, and checking their heart rate, or their blood pressure. using their iPhone or iWatch, patients are recording health information. PGHD comes chiefly from these common devices that everyone carries in their pocket or can emanate from other numerous wearable items including t-Shirts, hats, rings, earrings, sweatpants patches and implantable devices, as well as from various medical devices in the home such as thermometers, blood pressure cuffs, glucometers, and weight scales. These sensor instruments provide information on body temperature, blood pressure, heart rate, heart sounds, gait, body movement, body fluids, breath, and more. PGHD are also collected via manual data entry that a patient might write on a piece of paper or enter in a computer. The information is tracked by the patient and transmitted via a communication channel to a clinician’s office. The information helps the clinician determine the severity of the patient’s condition and how treatment should be handled. Use of PGHD has emerged as an important method for ensuring that clinicians have full information on a patient at the point of care and that patients are properly monitored and treated. Prior to the advent of PGHD, clinicians typically relied on patient recall during the office visit that the clinician manually entered into the patient’s record, based on what the patient told them.

One of the oldest PGHD implantable devices is the cardiac pacemaker. The first pacemaker was implanted in a patient in Canada in Oct,1958. Pacemakers send electrical pulses to help a patient’s heartbeat maintain a normal rate and rhythm. Pacemakers can also be used to help the heart chambers beat in sync so the heart can pump blood more efficiently to the body. Approximately three million people are using pacemakers today in the United States. (2)

Another device for collecting patient generated data is the Pulse Oximeter. The Pulse Oximeter is often referred to as the detector for the fifth vital.

They are typically placed on a fingertip and use light beams to estimate the oxygen saturation in the blood as well as the pulse rate. Pulse oximetry is a standard of care for monitoring oxygen saturation for patients receiving anesthesia.

Initial pilot studies, outlined in a white paper from the Office of the National Coordinator, show promising outcomes for the use of remote monitoring in the treatment of diabetes and heart failure. These studies reinforce the notion that the potential of clinically relevant data, captured outside of traditional care setting, improves outcomes, and enhances patient-provider communication. The ONC White Paper reinforces the importance of giving careful consideration to how existing health care practices and systems may be affected by PGHD, and how they may need to change, to realize any benefits. (3)

Clearly, our health system has not caught up with today’s available technology. The barriers to adoption are partially due to patient unwillingness to collect their data or their understanding of the process. Furthermore, we cannot have patients sending data to their clinician’s offices and have it disappear because no one knows what to do with it. Additionally, the burden on clinicians to rework their schedule to build time into their day to study and analyze patient generated data must be considered Finally, the current payment system and questions of how to fairly compensate clinicians for their time, is a huge hurdle. The ideal solution would be to have patient generated data go directly from a patient’s device, whether it is a mobile phone or a medical monitoring machine, directly into the patient’s electronic health record. This model of care puts the onus on patients to accurately collect and send their data to the digital health record. With the extreme shortage of physicians in primary care and in many specialty areas of medicine, we need to use automated technology to address information gaps. Perhaps the use of medical data analysts who understand “health speaks” could be hired to review patient generated data coming into the digital health record and analyze and communicate that information to clinicians. This would ensure better more accurate care and control costs. The last hurdle is how we overcome the fact that in the United States, we do not have the necessary infrastructure to address the issue of marginalized patients. PGHD requires that the nation has a fully functioning infrastructure, i.e., broadband systems, everywhere, to send data from one location to another. However, the availability of broadband technology for the country’s patients who live in hard-to-reach rural areas and in underserved populations is not yet resolved. This is an impediment to having these patients generate and send their health data. These barriers to the goal of including patient generated health data in patient treatment decisions could be overcome if all stakeholders – patients, clinicians, payers, and our governing agencies – are willing to make changes and consider PGHD a vital factor in achieving better outcomes.

  1. (Yale School of Medicine Cardiac Fact Sheet
  2. Remote monitoring and follow-up of pacemakers and implantable cardioverter defibrillators Haran Burri* and David Senouf Europace. 2009 Jun; 11(6): 701–70doi: 10.1093/europace/eup110
  1. Patient-Generated Health Data White Paper Prepared for Office of Policy and Planning Office of the National Coordinator for Health Information Technology Prepared by Michael Shapiro Douglas Johnston Jonathan Wald. April 2012 Pages 6-9



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