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The increasing volumes of data from medical records, mobile applications, devices, and high-throughput sequencing hold promise for facilitating the delivery of precision medicine, e.g., the use of data (clinical, -omics, sensor, patient preferences, social determinants of health, etc.) to personalize care. Yet the onslaught of information can be challenging for both patients and providers, as they seek to integrate this new knowledge into healthcare decisions.
This special issue of JAMIA Open is a collaborative effort of three AMIA Working Groups: Consumer and Pervasive Health Informatics, Ethical Legal and Social Issues, and Genetics and Translational Bioinformatics. We broadly seek submissions that consider the following challenges:
• Current state-of-the-science related to patient-centered care
o Limitations/Challenges in assessing the clinical validity of genomic and sensor data for an individual patient (including both under- and over-reaction to findings)
o Movement towards a biopsychosocial model for precision health where genomics, patient preferences, and cultural values are included in healthcare decision making
o Methods for evaluating and improving interpretability of artificial intelligence/machine learning models for both providers and patients.
• Patients as the driver of precision medicine:
o Opportunities for citizen science and “learning patients” or “patient informatician”.
o Analysis and interpretation of patient-generated health data records (including care management, social health determinants, health wearable/IOT device data, direct to consumer genetic testing)
o Technology-enabled consumer health and provider-patient communication
o Impact on patient-provider relationship, and economic impact to health systems
• An emerging divide where precision medicine may be less available to certain populations (e.g., socio-economic status, educational attainment, or race/ancestry)
o Facilitators and barriers to engaging in patient-centered care (including gaps of research/clinical evidence) for vulnerable and marginalized populations’
o Returning findings to patients without physician intervention.
• Potential unintended consequences of personalizing care
o Effects of public/semi-public genomic databases on health data privacy
o Legal risks to providers (e.g., deviation from population-derived standard of care, challenge of maintaining up-to-date knowledge of all genomic/sensor-based findings, burden of data reanalysis on health systems, etc.)
This list is neither exclusive nor exhaustive; we welcome submissions that fit the general theme of this issue, but that have not been explicitly mentioned.
This special issue will be co-edited by: Pei-Yun Sabrina Hsueh (Consumer and Pervasive Health Informatics)(phsueh AT us.ibm.com), Anthony Solomonides (Ethical Legal and Social Issues)(tony.solomonides AT gmail.com), and Laura Wiley (Genetics and Translational Bioinformatics)(LAURA.WILEY at UCDENVER.EDU).
Authors can use the standard submission process at JAMIA OPEN: https://mc.manuscriptcentral.com/jamiao. To ensure consideration in the special issue, authors should provide a cover letter that clearly states that the submission is for the “Special Issue on Precision Medicine in the Patient-Centered Era”.
Submission Deadline: March 1, 2019
Decision to Authors: April 15, 2019
Revisions Due: May 31, 2019
Final Decisions: June 15, 2019
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