It’s about the data. The U.S. cannot get to a truly patient-centered health system if we don’t improve the evidence we use to tell us how we’re doing. Patients and families must help define the unmet needs and health goals that modern technology - device, app, drug or otherwise — need to solve. We need to have consistent measures of true costs to the patient; not just copays and premiums, but also access-related costs like transportation and lost wages, and costs associated with poor outcomes like adverse events and suboptimal treatment. Researchers and decisionmakers must prioritize understanding how such differences and costs play out in patient subgroups, by leaning in to diversifying clinical research and investing in long-term post-market studies that map real-world impacts. There is promise in current trends, but we need visible resources and leadership to elevate the patients and families as essential partners with the expertise to ask better questions and find better answers.
