Due to the COVID-19 pandemic, there been a limit to in-person visits, complicating the communication between patients and providers. To overcome these challenges, the use of channels to report outcomes to provide medical staff with a way to stay in touch with the patient and share and gather information at the same time. The use of technology in combination with a shift towards patient-centricity in healthcare result in an opportunity to create patient-generated health data (PGHD).
PGHD is generated by the patients themselves. It can be collected on three different levels:
- Patient information, e.g. patient’s interactions, outcomes, and side effects with existing treatments
- Contextual information, e.g. demography, environmental conditions, behaviours, and general health
- Non-healthcare information, e.g. gym membership, grocery shopping records, and health apps
PGHD can be generated from active and passive data sources. Active sources supply information at the first level e.g. by using surveys. Passive sources supply data for the second and third levels by using information from smart devices or health apps. By combining different sources on multiple levels, it is possible to gain insights that are usually not available. Knowing more about the background and indirect healthcare-related information helps to minimise uncertainty, unavailable data, and unreliable patient cohorts. PGHD contributes to a holistic view of outcomes to treatments allowing drawing substantiated conclusions.
There are challenges concerning PGHD as well. To provide the sharing of active and passive data, analytical tools are needed, as well as adjustments to existing workflows and compliance rules. Not every treatment plan will align with PGHD. The efficiency of the existing workflow can potentially be negatively affected. Increased liability should also be considered, as well as setting realistic patient expectations. Next to these factors, the quality of data that is of great importance, and the patients’ technical abilities, also impact PGHD. Collecting data means involving data security, privacy compliance and combining data from different levels and sources.
The COVID-19 pandemic has emphasised the possibilities of PGHD. Using data from different levels and sources contributes to understanding treatments of disease and the outcomes. Involving the patient intensively stimulates a trusting and meaningful relationship that benefits research. PGHD catalyses personalisation of care by responding to a patients’ profile. This way of customisation will create the chance of improving health outcomes more strategically and effectively. However, the challenges should be considered as well.
The Advanced Industry for Technology (ATI) project website reports frequently about technological fields in multiple sectors. The report on technological trends in the medical devices industry and related healthcare provides more in-depth information about digital technologies and developments within the healthcare and pharma sector.