Patient-centered research aims to empower and equip patients with the necessary tools to advocate effectively for their care. We recognize the immense value of patient input and have experience involving patients in research and the processes of software development. This allows us to build tools that promote health literacy and shared decision-making and to effectively respond to patient preferences, needs, and values.
Our work with the Nephcure Kidney Network for Patients with Nephrotic Syndrome (sponsored by the Patient-Centered Outcomes Research Institute, or PCORI) has involved mobile data collection and dissemination approaches and seeks to effectively engage patients along the research continuum. For this endeavor, Arbor Research developed both a mobile-optimized registry website and a mobile app.
Our administration of the NKN PPRN Patient Registry involved the integration of a rich set of patient-reported experiences, preferences, and outcomes with longitudinal clinical data from electronic health records (EHRs). It provided the research community with a powerful resource for truly understanding the paths faced by patients suffering from several rare and devastating kidney diseases.
Our “Kidney Health Tracker” mobile app was designed and developed to help patients track kidney-related health indicators, symptoms, and medications. Released in 2017, the app may be downloaded without charge from the Google Play store (Android mobile devices) or Apple App Store (iOS devices). The app was provided as an incentive to engage patients, facilitate their care, and encourage them to share their health data and participate in research activities. The Kidney Health Tracker mobile app is currently being used as the basis for a data integration pilot project in which patients may elect to share collected health data with their corresponding EHR. This data integration is being implemented by way of a standards-based approach using the FHIR data format standard with the Epic health data system.
In addition to these research and technology projects, we have built and maintained a number of other solutions that are patient-focused. For our DOPPS program area, we have developed and distributed mobile tablet-based electronic questionnaires that are completed by patients in health centers. This has allowed us to eliminate the use of paper questionnaires and has resulted in improved data quality. For our NEPTUNE study, we built an electronic questionnaire system based on SMS (texting) for patient-directed questions and responses. We have also embraced the sharp increase in the use of mobile devices on the internet by optimizing our websites for use with mobile devices and smaller screen sizes.
Patients gather information and interact with websites in many different ways and we have worked to effectively support those scenarios. State-of-the-art research requires state-of-the-art software to be agile and responsive to specific project needs. When staff from the Dialysis Outcomes and Practice Patterns Study (DOPPS) sought solutions to implement a consistent study protocol in multiple languages and cultural settings around the world, their needs spurred a new Arbor Research data management initiative. In 2002, Arbor Research began building its own data-collection and study management software. By the end of that year, IT staff watched late at night as DOPPSLink collected its first data submitted by Japanese study coordinators in facilities halfway around the world.
As the need to support more efficient observational data collection grew, DOPPSLink became ArborLink. Now in use for over 20 protocols in 24 countries, each implementation of ArborLink is adapted to meet the unique needs of the study.
ArborLink combines features offered by many clinical trials solutions – such as real-time data validation and study management tools – with functions needed for international observational studies. ArborLink responds uniquely with customizable protocols adapted for each translated language and medical culture, implementation of the complex study and sampling protocols, and management of biosample collection and processing.
ArborLink is successful because of the collaborative culture at Arbor Research. Rather than functioning as a software development silo, we practice multidisciplinary collaboration. Interaction with users, clinicians, analysts, and study monitors provides invaluable context and insight to our IT development staff. Through this model, we design and provide products that add specific value to each study they support.