Health data that patients collect themselves, using smart watches – such as those from Fitbit or Apple – or other medical devices for home use – can provide an indication of a medical condition and aid in making a diagnosis. However, that data can also lead to errors. For example, if the patient does not perform the measurements correctly or if the device is not accurate enough. In short, for many physicians it is difficult to determine what to do with this patient-generated health data.
Patient Generated Health Data
New health monitoring tools, such as the mobile health and wellness applications, smartwatches and wristbands, allow patients to collect data and pass it on to healthcare providers. On the one hand it is a positive development because there is almost nothing more valuable than a committed patient who cares deeply about his well-being. Conditions such as hypertension or migraine are often diagnosed precisely through the patient’s observations and notes.
But there is also a danger in patient generated health data (PGHD). First, the amount of data generated is sometimes overwhelming. Think dozens of pages of printed or digitally stored fitness application data, charts with patient notes and trends in physical activity. Patients also bring heart rate and sleep quality stats several weeks or more earlier, thinking they need to be carefully studied.
The physician can decide on the basis of his experience and knowledge whether the data is clinically relevant. If not, they should be ignored as the doctor will not be able to measure the accuracy of the device. However, the patient – who has worked hard to collect the data – is convinced that the information is valuable. After all, he has put a lot of energy (and money) into monitoring his health. Clinically appropriately disregarding this information can lead to a deterioration of the relationship with the patient and loss of trust. Patients feel ignored while the doctor believes he is inundated with irrelevant data.
Useful or redundant?
The relevance and meaning of patient-generated health data is primarily a matter of context. However, conclusions of the available scientific analyzes are optimistic. Like the 2020 study published in Health Informatics Journal. On how patient-generated health data and patient-reported outcomes affect the patient-physician relationship: a systematic review. In eight analyzed publications, patients and clinicians saw PGHD as a tool that helped to improve communication. An additional five publications described an improvement in relationships and two studies concluded that PGHD enables physicians to provide more empathetic care. Especially this last element turned out to be very important in the patient-practitioner relationship, as indicated in the study. Apart from that, doctors have modified their treatment plans several times after studying PGHD.
However, there were also many negative opinions, mainly related to the lack of time to analyze the data provided by the patient, its non-uniformity or lack of guidelines. The lack of integration between PGHD, clinical workflows and Electronic Health Records (EPD), leading to difficulties in qualifying such information, was also addressed. Interestingly, there were also situations where doctors had pointed to the deterioration of communication, as they had to focus on reading stacks of papers rather than conducting a medical interview.
A 2019 study published, Patient Generated Health Data Use in Clinical Practice: A Systematic Review, found that 46% of Americans were “digitally active” in 2016, meaning they were using three or more digital health devices. According to EUROSTAT, in 2020 almost one fifth (19%) of EU citizens aged 16 to 74 had a smartwatch, fitness band or other device that monitored their physical activity.
Importance of patient-generated health data
Undoubtedly, PGHD, patient-generated health data, will gain in importance as it generates vital data on behaviour, habits and health parameters recorded in home environments. Some research suggests that PGHD may lead to better clinical decision-making and greater patient involvement.
A lot of information comes from the patient:
- Personal: health goals, values, concerns and hope
- Medical history: diseases in the family and hereditary diseases
- Medication: medications taken by the patient and not found in the records
- Biometric data (now measurable at home): blood pressure, weight, body temperature, oxygen saturation, glucose level, heart rate
- Behavioral data: physical activity, calories burned, sleep quality, other routine activities that affect health (e.g. diet)
- Environmental data: room temperature, noise, humidity, place of residence, air quality (pollution)
- Social interactions: time spent on online and real-life interactions
- Observations of patients regarding their treatment (so-called patient-generated results)
Most data is not (yet) included in the patient’s health file.
A matter of time
Healthcare providers are concerned that the additional responsibility of analyzing PGHD is beyond their capabilities, especially given the limited time per appointment. In a simulation test conducted to study the impact of PGHD on healthcare, the researchers identified indirect consequences such as increased labor costs due to the time it takes to analyze the data. An indirect consequence was a disrupted work schedule. In addition, clinicians and nurses stated that they were not competent enough to analyze PGHD.
The study authors pointed out that integrating PGHD into clinical practice will allow less time for other elements of the patient’s visit. Healthcare providers are also unsure whether the data provided by their patients is useful and of high quality to aid in decision making. There is another element: responsibility. What if the doctor ignores seemingly insignificant data that actually indicated a serious illness? Should the doctor be charged with medical malpractice?
An equally important question is how to integrate PGHD – if at all – into the Electronic Patient Record (EHR). And how doctors can effectively analyze the data to support clinical decision-making. The problem with PGHD would disappear if the data were always provided electronically. Artificial intelligence systems can then analyze big data sets in seconds to check for alarming trends.
What can doctors do now?
Experts recommend that every medical institution develop a set of standards that doctors and nurses can follow with a wide margin for their own judgment. Of course, it always depends on the relationship between the patient and the doctor, whether the patient is new or chronic, etc. The procedures should include decision-making steps such as:
- Is the data clinically relevant?
- If so, how did they collect it? Is it reliable?
- Did the patient take the measurements correctly?
- If the data are not clinically significant, can they be used in other contexts, for example for prevention?
- What information should be included in the EPD? If so, where? Who should be responsible for the data (doctor, nurse)?
- How do you communicate with the patient while providing the data you have collected yourself?
- In what context is the data provided? Are there any other symptoms, doubts or observations relevant to the information?
- When should the doctor/nurse encourage the patient to collect and provide data?
- Is the patient’s consent required to process non-medical data that he has provided in the EHR?
- How important is it to consider PGHD with regard to patient communication, collaboration to achieve therapeutic or preventive goals (compliance), and further fostering patient involvement?
- How do you use the active approach to the patient?
- If the data the patient collects has no clinical value, does it have psychological value (“the patient thinks the data is important”)?
- Which categories of data should always be analyzed?
- How much time should be allotted for PGHD analysis so that other parts of the visit are not neglected?
- How to discuss the data with the patient?
- Should there be a manual to make it easier for patients to collect data and provide it to the doctor? (educational material)
- Can a planned or existing patient e-portal/app include PGHD?
The most important part of the process is identifying the patient’s unmet needs, as these can lead to a greater interest in collecting data. The doctor can also directly ask the patient what symptoms made him decide to collect data.
The research shows that PGHD has more advantages than disadvantages and that doctors should encourage their patients to collect data. But such an open approach needs to be supported by the right strategy so that doctors don’t feel overwhelmed when they have to check the data provided by the patients. It will take some time before PGHD is integrated with the medical data stored in the EHR.
This article appeared on ICT&health International