Patient‐centered care and genomic medicine: A qualitative provider study in the military health system

Abstract

The diagnostic and predictive information produced by genomic sequencing may impact medical management, and it is critical that providers and institutions are able to use this information appropriately for patient care. Guided by the patient-centered care model, we investigated provider perspectives of patient, provider, and system-level factors that could influence the implementation of genomic medicine within the integrated healthcare system of the US Department of Defense (DOD).The purpose of this study was to explore patient-centered care elements related to the application of genomic sequencing in a military healthcare facility to understand the current capability and key gaps for patient-centered genomic medicine. Twenty DOD healthcare providers were interviewed regarding their past experiences and future expectations of genetics and genomics. These semi-structured interviews were recorded, transcribed and analyzed. All providers interviewed had some experience with genetics, but the level of experience varied greatly. Providers reported widely differing degrees of knowledge and confidence regarding genetics and about military-specific policies regarding genetics which varied by specialty. In addition, most providers stated that their department did not currently have the infrastructure to allow for the care of patients with secondary genetic findings, defined as genetic findings which are intentionally examined because of their importance to healthcare management, but are unrelated to the reason the individual underwent sequencing.This study reveals gaps in key elements of patient-centered care related to genomic medicine that may be helpful to address in future implementation efforts.

Are genetic counselors prepared to counsel active‐duty service members? A survey of genetic counselors' self‐efficacy, counseling techniques, and knowledge of military policy

“…In ANOVA and linear regression analysis, there were no significant associations among genetic counselor demographics, their reported self‐efficacy from the GCSES scale, and military knowledge. These results are consistent with a qualitative study by Hellwig, Turner, Manolio, et al (2019) and Hellwig, Turner, and O’Neill (2019) suggesting that providers within the military health system itself had varied knowledge of the military‐specific policies that govern how genetic information is managed within military healthcare.…”

Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis

“…Alharbi et al assessed the knowledge of 126 South Arabian physicians about PM in diabetes mellitus management and found that 82.5% of the participants had poor knowledge in this area [ 82 ]. These and other studies [ 37 , 44 – 47 , 58 , 86 , 105 – 108 ] reveal the need for further education of many health care providers, however, this requirement may vary between professionals in different fields [ 53 , 81 ]. An exception seems to be the skills of physicians in oncology.…”

“…In addition, representatives from patient organizations note that patients often have difficulties in understanding basic medical information and that patient education will be a major task for patient organizations [ 96 ]. Hellwig et al pointed out that patients’ understanding is also in the interest of health care providers, as it facilitates the communication process [ 86 ].…”

“…In addition to possible disparities in access to PM, professionals and patients fear discrimination based on the results of genetic testing [ 27 , 79 , 92 , 97 ], particularly by insurance companies or employers [ 46 , 51 , 54 , 63 , 86 , 94 – 96 , 98 , 115 ]. The majority of physicians interviewed in the USA and Germany would therefore not grant access to genetic information to employers and health insurance companies [ 88 ].…”

The thorny complexities of visualization research for clinical settings: A case study from genomics

“…Challenges and opportunities relevant for visualization in clinical genomics has been discussed in previous work. Handling variants of unknown significance is one such challenge ( Biesecker, 2012 ; Hellwig et al, 2019 ), as is other types of decision support design ( Yaung and Pek, 2021 ; Kulchak Rahm et al, 2021 ). Effective reporting is another area in focus, both to ordering physician and to patients ( Biesecker (2012) ; Wynn et al, 2018 ; Sanderson et al, 2019 ).…”