JMIR Publications

ABSTRACT

Background:

As COVID-19 moves the world towards virtual options, digital tools have become a viable means for patients to address their health and information needs. Governments and health care organizations are offering digital tools such as self-assessment tools, symptom tracking tools, or chatbots. In addition, other sources of digital tools are available on the Internet free of charge, such as those offered through patient platforms. We define patient platforms as health-specific websites that offer tools to anyone with Internet access for engaging them in their health care process with peer networks to support their learning. While numerous social media platforms engage users without upfront charges, patient platforms are health specific. As little is known about their business model, there is a need to understanding what else they are trying to achieve beyond supporting patients so that patients can make informed decisions about the benefits and risks of using the digital tools they offer.

Objective:

To explore what else patient platforms are trying to achieve beyond supporting patients, and how their digital tools can be used to generate income.

Methods:

Textual and visual data collected from a purposive selection of eleven patient platforms were analyzed using Framework Analysis. Data were systematically and rigorously coded and categorized according to key issues and themes by following five steps: familiarization, identifying a thematic framework, indexing, charting, mapping and interpretation. We used open coding to identify additional concepts not captured in the initial thematic framework. This paper reports on emergent findings on the platforms’ business model and their income generating processes.

Results:

Our analysis revealed that besides patients, platforms also support other parties with an interest in the health and information exchanges. Patient platforms did not charge upfront fees, but generated income from other sources, such as advertising, sponsorships, marketing (e.g., sending information to users on behalf of sponsors, or providing means for sponsors to reach patients directly), supporting other portals, and research services.

Conclusions:

This study reports on mechanisms by which some patient platforms generate income to support their operations, gain profit, or both. Although income-generating processes exist elsewhere on social media platforms in general, they pose unique challenges in the health context since digital tools engage patients in health and information exchanges. Our study highlights the need to minimize the potential for unintended consequences that can pose health risks to patients or can lead to increased health expenses. By understanding other interests that patient platforms support, our findings point to important policy implications such as whether (and how) authorities might protect users from processes which may not always be in their best interests, and can potentially incur costs to the health system.