Sharing Data
An important goal with precision medicine is to collect actionable, relevant data and share it in a fashion that improves the clinical and research community. Dr. Curtis suggested clinical data registries, such as the ACR’s Rheumatology Informatics System for Effectiveness (RISE) registry, can be valuable by providing rheumatologists with the ability to compare specific aspects of a patient’s disease and response to treatment with similar patients treated differently who may live across the county. Understanding what factors relate to not changing therapy is likewise important.
For example, an analysis including treatment escalation data from the ACR RISE registry by Dr. Curtis and colleagues showed one‐third to two‐thirds of RA patients failed to change their treatment, even when the patients remained in moderate or high disease activity.3 Dr. Curtis and his co-authors concluded that multi-modal interventions developed and tested among RA patients and their providers could be beneficial in supporting shared decision making and goal‐directed care to remove barriers to escalating treatment. Reducing inappropriate practice-level variability and better engaging patients in driving their own healthcare are valuable roles for this use of big data.
Consider the Patient Perspective
In work to personalize treatment, Dr. Curtis stressed the importance of acknowledging that patients can have very different goals for their care. “A patient’s treatment goals and enthusiasm to improve their health condition may depend on their appetite to switch therapies. Sometimes, this will entail undertaking some risks associated with treatment change, and not all patients will agree to that.”
To understand the patient’s perspective in their care trajectory, rheumatologists need to facilitate shared decision making to understand the patient’s goals, and “this takes time and a dialogue,” he cautioned.
Dr. Curtis noted that whether you are striving to understand a patient-reported outcome or working with patients to set goals, the point is to make sure your patients understand that you care about them as a whole patient, “not just inflamed joints and skin.”
He went on to share developments in efforts to redesign patient-reported outcome-data capture using such tools as the National Institutes of Health (NIH) Patient-Reported Outcomes Measurement Information System (PROMIS) to evaluate and monitor physical, mental and social health in adults and children. The NIH PROMIS system is a set of efficient patient-reported outcome data collection tools to capture what matters most to patients. These data can be used to assess a patient’s health status, physical function, mental health and ability to engage in such activities as spending time with friends or engaging in hobbies at home. They also measure a patient’s perception of pain, anxiety and fatigue.
Dr. Curtis and colleagues applied PROMIS instruments (questionnaires) to assess treatment response in the AWARE trial. He and his co-authors found high correlation between PROMIS instruments and the traditional patient and physician assessments among more than 1,000 RA patients starting a new infusion biologic.4
These results support the validity of using the NIH PROMIS system to assess outcomes that matter to patients. Moreover, this can be done at home and captured electronically (e.g., on a smartphone), and is highly efficient, taking less than one minute per domain. Capturing patient-reported outcomes in this fashion is a tremendous improvement over the traditional methods that patients don’t care much about (e.g., counting the number of swollen and tender joints).
