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The Use of a Blockchain to Foster the Development of
Patient-Reported Outcome Measures
JASON C. GOLDWATER, MA, MPA
August 8, 2016
Introduction to Patient Related Outcome Measures
Patient-related outcome measures (PROMs), which focus on outcomes that are directly
related to the patient, have taken on added importance and significance over the past several
years. [1] This is due, in part, to the increased attention focused on the patient experience of
care and to provide a patient-focused assessment on the burden and impact of disease.
PROMs can include symptoms and other aspects of health – related quality of life indicators
such as physical or social function, treatment adherence, and satisfaction with treatment. They
can also facilitate more accurate patient-physician communication in terms of the burden of
treatment-related morbidities by providing a more detailed and complete evaluation of
treatments for specific conditions, such as cancer or multiple sclerosis. [2]
PROMs are distinct from traditional clinical efficacy measures (e.g., survival in cancer,
smoking cessation) because they directly reflect the impact of disease and its treatment from
the patient’s perspective. [1] It can examine the balance between the efficiency of the
treatment and its burden on the patient. It is also effective in looking at areas such as physical
functioning and overall well-being, and highlighting the efficacy and safety of treatments in
relation to its overall clinical benefit. Because the measures themselves are developed from
the patient’s perspective, it can also facilitate greater patient involvement in treatment
decision-making as well as providing guidance for health care decisions. [1]
However, there is difficulty in the development, implementation and sustainability of
PROMs over the long-term. [3] The success of a well-developed PROM that adequately and
accurately reflect that patient’s perspective relies on
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