Adding to the patient experience by designing UMHealthResearch.org — a human-centered health research platform

Aalap Doshi aalapd@med.umich.edu

Abstract

The recent experiences of a number of health care organizations in Canada and elsewhere have illustrated how integrating patients into quality improvement efforts and involving them in decisions on the design of care and care facilities can contribute to the success of those efforts[1]. Expanding on that notion, engaging patients around health research is also an essential strand of the patient experience fabric.

Improving medical care relies on new knowledge gained from research. Typically, clinical research information tends to be broadly dispersed, creating a difficult and inefficient environment for patients and community members to find studies. On the other hand, recruiting volunteers into clinical research remains a significant challenge for many clinical research study teams, particularly as limited funding necessitates shorter timelines to engage participants [2]. Thus, the Michigan Institute for Clinical and Health Research (MICHR) at the University of Michigan developed UMHealthResearch.org (formerly UMClinicalStudies.org) (http://www.UMHealthResearch.org), — a human-centered digital platform that links the community to a single gateway for health research. The platform currently has over 27,000 volunteers signed up and willing to be part of health research.

While there is not a set process for conduction patient-centered, participatory design, as Kensing et al.(1998) point out, some groups have systematically organized their design practices into a coherent ensemble of tools and techniques[3]. Our journey of co-developing the platform with patients and members of the public has taught us a lot about designing to involve the community in health research. This presentation aims to provide a short demo UMHealthResearch.org, talk about the empathetic, human-centered process we have used to design it, provide some lessons from the field while doing so, and discuss using new technologies like Augmented Reality in an effort to enhance the patient experience by engaging them around health research.
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