Clinical genomic research faces increasing challenges in establishing participant privacy and consent processes that facilitate meaningful choice and communication capacity for longitudinal and secondary research uses. There are an evolving range of participant-centric initiatives that combine web-based informatics tools with new models of engagement and research collaboration. These emerging initiatives may become valuable approaches to support large-scale and longitudinal research studies. We highlight and discuss four types of emerging initiatives for engaging and sustaining participation in research.

There is increasing interest in medical text messaging interventions being used to achieve positive patient outcomes across a range of clinical research and health practice environments. Short messaging service (SMS) is a low-cost tool that provides an easy communication route to engage potentially broad populations through text messaging, and is part of the growing social trend toward increased adoption of personal communication technologies by patient populations. Testing the effectiveness and impact of various communication strategies requires navigation of a complex web of clinical and research regulations and oversight mechanisms. We describe a case study of the implementation of SMS to provide bidirectional communications between physicians and patients involved in routine care reminders to illustrate the review processes and governance structures needed. By mapping the regulatory and approval processes required to manage and steward a research study across clinical and community boundaries, we provide a guide for other translational health researchers who may utilize similar kinds of personally owned technology interventions as research tools.

Background

Synergies between technology and health care in the United States are accelerating, increasing opportunities to leverage these technologies to improve patient care.

Methods

This study was a collaboration between an academic study team, a rural primary care clinic, and a local nonprofit informatics company developing tools to improve patient care through population management. Our team created a text messaging management tool, then developed methods for and tested the feasibility of bidirectional text messaging to remind eligible patients about the need for lipid testing. We measured patient response to the text messages, then interviewed 8 patients to explore their text messaging experience.

Results

Of the 129 patients the clinic was able to contact by phone, 29.4% had no cell phone or text-messaging capabilities. An additional 20% refused to participate. Two thirds of the 28 patients who participated in the text messaging intervention (67.9%) responded to at least 1 of the up to 3 messages. Seven of 8 interviewed patients had a positive text-messaging experience.

Conclusions

Bidirectional text messaging is a feasible and largely acceptable form of communication for test reminders that has the potential to reach large numbers of patients in clinical care.