In our technology-forward times, healthcare and technology are blending in ways that go beyond electronic medical records or lab information systems. Shannon Haymond, PhD, and David Grenache, PhD, both are fascinated with how people are enthusiastically seeking to take charge of their own healthcare, including through social media and direct-to-consumer testing (DTC), and they joined forces to present Tuesday's session, "Digital Medicine and the Connected Health Consumer: What You Need to Know."
This symposium highlighted that people are generating their own data through digital tools and wearables and sharing this information through social media. Individuals compile health data from multiples sources, such as apps and health records, and see and share the outputs in health dashboards on their digital devices. Since this trend is not a passing fad, regulatory bodies such as the U.S. Food and Drug Administration are taking notice and developing digital health policies and guidelines and beginning to mine online data for adverse events reporting. Additionally, with more clinical laboratory professionals participating in social media, the laboratory community has an opportunity to engage with the public to share our knowledge, increase recognition of our expertise, and drive culture change by learning about the public’s expectations of clinical lab testing.
Haymond discussed how people are using their devices, social media, and apps to access healthcare information. Upwards of 50% of patients now have online access to their health information via portals. When polled, 82% of the audience indicated their institutions offer patient portals, but only 56% reported having input into how lab information was presented. Thus, Haymond encouraged attendees to get involved and ensure this content is not only appropriate but also easily understood.
Additionally, Haymond mentioned that people with shared health interests come together easily online to form groups. In these groups, they share experiences regarding their diagnoses and disease management. Despite these advantages, not all shared health information is evidenced-based or trustworthy. Furthermore, social media may even impact clinical trials, especially for patients with rare diseases who share information about their experiences in ongoing trials. On the plus side, social media and apps enable increased and easier enrollment in studies.
Grenache focused on the ‟quantifiable self” achieved through wearable devices, digital dashboards, and DTC. Dashboards like Apple’s iPhone Health app enable users to view their long-term health trends in easy-to-understand formats. Consumers have embraced healthcare wearables with 33% wearing a device in 2018. Key considerations for consumers in using these tools include the ease of data entry, how data are presented, and how well their privacy is protected. Likely underappreciated by consumers, HIPAA privacy rules do not apply to information from wearable devices.
The public has embraced DTC, and when surveyed 83% of the audience also indicated that they view this modality favorably. “Know that patients want it and believe it will be beneficial to their health,” Grenache emphasized.
This informative and engaging session revealed the many uses for digital health, while also underscoring many considerations and concerns that both consumers and the medical community need to acknowledge and address to best serve the public’s interest.