About
Recent technological advances have led to the rapid expansion of available biosensors, wearable devices and smartphone technologies that allow monitoring of physiological parameters both within and outside of traditional healthcare delivery settings. Both passive data capture via sensors (e.g., step counts, movement patterns, sleep, etc.) and active data capture involving patient input such as patient-reported outcomes measures (e.g., visual analog scales for pain, global; Patient Health Questionnaire [PHQ] for depression, etc.) can be made available to investigators with software applications (Apps) on mobile computing platforms (e.g., smartphones, tablets, etc.). Through software apps, data capture can extend beyond traditional research spaces and institutional walls, thus, empowering investigators and offering underserved persons with disabling chronic conditions new opportunities to participate in the clinical, outcome or behavioral interventional studies. Rather than replace traditional data sources and existing paradigms for clinical research, these new tools offer the promise to complement them, extend the reach of clinical research, and enrich the information available to investigators. However, the potential for these types of data to be transformative can only be realized through tight integration with the traditional data sources already available to researchers and clinicians in the form of electronic health record (EHR) data, registry data, and existing biospecimen repositories. Our Core will enable this integration and educate its investigator research base on how to make effective use of these resources for research, quality improvement, and clinical care.
By creating a collaborative space for rheumatologic and musculoskeletal disease (MSD) investigators to work with state-of-the-art informatics tools, including real-world data and mobile health, as part of the DCI Core, we will promote expanded use of software tools to promote novel research in new settings and foster innovation.
In 2011, the NIH Consensus Group defined mobile health as “the use of mobile and wireless devices to improve health outcomes, healthcare services and health research”. Through this Core, we will empower rheumatologic and MSD investigators to overcome existing barriers to effectively integrate digital technologies plus other real-world data (e.g. EHR) into their research and address; 1) difficulties in communicating effectively with software developers who lack insight into the academic research process; 2) the significant resources and time required to build “de novo” software from the ground up; 3) challenging integration of data from mobile technologies into the commercially available electronic health records that clinicians and researchers already use in their practice; and 4) provide needed educational opportunities tailored to improve communication between academic investigators and software developers, with a particular focus on junior investigators to enable them to incorporate technology into their research and enhance informatics-focused collaborations.
Consultation
DCI informatics experts will provide consultation services to CCCR investigators in the functionality and desirability of software, lead discussions regarding building the platform, testing and implementing it in practical applications, and maintaining the app long-term for positive research and clinical outcomes. In collaboration with the Admin core, we will implement a comprehensive plan for education, enrichment, and dissemination by providing expertise on established and novel methodologies to investigators focused on diseases within the NIAMS mission; incorporate innovative educational tools such as the Kaizen gamification platform; and provide outstanding consultation and mentoring for young investigators in rheumatic, musculoskeletal, and skin diseases.