What is patient generated health data?
Patient Generated Health Data (PGHD), defined as “health-related data created, recorded, or gathered by or from patients (or family members or other caregivers) to help address a health concern,” can be biometric data from sensors or data entered into questionnaires. Patients, not providers, are primarily responsible for capturing or recording these data and deciding how to share or distribute them (HeathIT.gov accessed 11.23.20). Having data entered before the visit by the patient or parent provides efficiency for the clinician and assures that the visit includes the patient’s own priorities. Data from two studies not only showed improved quality of life and reduced emergency department use from use of PGHD but actually significantly longer survival compared with usual care (Basch, 2017) and high levels of patient and physician satisfaction (Rosenstein, 2017). In this age of physician burnout from the demands of documentation, the physicians assisted by PGHD significantly noted that its use “let me be a doctor again”.
PGHD can not only assist in a more accurate history but and help optimize medical care in several additional ways.
A particularly valuable form of PGHD comes from use of online screening and diagnostic tools that are evidence-based and scored to compare the patient’s symptoms to national norms. Broad band screening looks for risk that the patient may not identify such as a delay in a child’s development, or important but not easily revealed information such social determinants of health (SDoH) or substance use. Use of such tools more accurately detects risks, whether the patient voices a concern or not, allows for early detection and more effective and less costly intervention, thus are rewarded with billing codes for clinicians. More recently SDoH data is being used to stratify risk for better negotiated rates for insured groups but the quality of this information from billing data is marginal for this purpose.
The CHADIS clinical process support system, now integrated with MicroMD, collects PGHD using the clinician’s choice of >600 tools ranging from broad band scored screens and diagnostic tools to structured history and free text. Automatic assignments by age and type of visit set up initially assure that patients complete the appropriate questionnaires and results are presented as prioritized results, shown with cut scores, individual items, and graphics. Such comprehensive pre-visit information saves time allowing clinicians to focus on the most important issues while knowing that all areas have been covered. The scored results and structured data populate a visit note saving documentation time.
SDoH data obtained directly from patients has been programmed in CHADIS to uniquely ask about help being received or barriers to care. These answers populate patient-specific motivational interview talking points for the clinician to activate the patient to accept a referral using an evidence-based method. The figures and graphics automatically created using PGHD in CHADIS facilitate Shared Decision Making of clinicians and patients together as recommended by the Institute of Medicine as an effective way to provide patient centered care and optimize treatment adherence.
People are often not very knowledgeable about health but deserve to understand their own health and health risks. As important, patients will not act on clinician advice if they do not understand it. Specifically addressing patient needs with educational materials takes expertise, time, and materials. Going further to adjust to a patient’s level of literacy, language, health literacy, and preferred learning format such as videos is beyond what medical staff can normally provide. When using CHADIS, patients can select their preferred language (English, Spanish or French) to complete tools but clinicians see results in English. In addition, CHADIS PGHD results trigger patient-specific education and local as well as national resources from a large database.
PGHD is especially valuable for telemedicine visits when neither previsit tools on paper nor post visit handouts would work. CHADIS also allows for scheduling monitoring tools to collect PGHD between visits with SMS reminders also a billable service that improves early detection of any decline in functioning such as asthma control.
Since conditions and their prognosis are learned about from patterns of symptoms the large database possible from PGHD makes such analysis by use of machine learning feasible. The need for Quality Improvement methods to optimize care processes is now universal. These methods require a large amount of data collected over time. PGHD from creates graphics of QI efforts and even can be used for physicians to earn their required Maintenance of Certification credits from CHADIS programs without requiring onerous chart reviews.
