Full sharing of the electronic health record with patients has been identified as an important opportunity to engage patients in their health and health care. The My HealtheVet Pilot, the initial ...personal health record of the US Department of Veterans Affairs, allowed patients and their delegates to view and download content in their electronic health record, including clinical notes, laboratory tests, and imaging reports.
A qualitative study with purposeful sampling sought to examine patients' views and experiences with reading their health records, including their clinical notes, online.
Five focus group sessions were conducted with patients and family members who enrolled in the My HealtheVet Pilot at the Portland Veterans Administration Medical Center, Oregon. A total of 30 patients enrolled in the My HealtheVet Pilot, and 6 family members who had accessed and viewed their electronic health records participated in the sessions.
Four themes characterized patient experiences with reading the full complement of their health information. Patients felt that seeing their records positively affected communication with providers and the health system, enhanced knowledge of their health and improved self-care, and allowed for greater participation in the quality of their care such as follow-up of abnormal test results or decision-making on when to seek care. While some patients felt that seeing previously undisclosed information, derogatory language, or inconsistencies in their notes caused challenges, they overwhelmingly felt that having more, rather than less, of their health record information provided benefits.
Patients and their delegates had predominantly positive experiences with health record transparency and the open sharing of notes and test results. Viewing their records appears to empower patients and enhance their contributions to care, calling into question common provider concerns about the effect of full record access on patient well-being. While shared records may or may not impact overall clinic workload, it is likely to change providers' work, necessitating new types of skills to communicate and partner with patients.
The American College of Medical Genetics and Genomics recently issued recommendations for reporting incidental findings from clinical whole-genome sequencing and whole-exome sequencing. The ...recommendations call for evaluating a specific set of genes as part of all whole-genome sequencing/whole-exome sequencing and reporting all pathogenic variants irrespective of patient age. The genes are associated with highly penetrant disorders for which treatment or prevention is available. The effort to generate a list of genes with actionable findings is commendable, but the recommendations raise several concerns. They constitute a call for opportunistic screening, through intentional effort to identify pathogenic variants in specified genes unrelated to the clinical concern that prompted testing. Yet for most of the genes, we lack evidence about the predictive value of testing, genotype penetrance, spectrum of phenotypes, and efficacy of interventions in unselected populations. Furthermore, the recommendations do not allow patients to decline the additional findings, a position inconsistent with established norms. Finally, the recommendation to return adult-onset disease findings when children are tested is inconsistent with current professional consensus, including other policy statements of the American College of Medical Genetics and Genomics. Instead of premature practice recommendations, we call for robust dialogue among stakeholders to define a pathway to normatively sound, evidence-based guidelines.
Essential elements of personalized medicine Burke, Wylie, M.D., Ph.D; Brown Trinidad, Susan, M.A; Press, Nancy A., Ph.D
Urologic oncology,
02/2014, Letnik:
32, Številka:
2
Journal Article
Recenzirano
Odprti dostop
Summary Objectives Genomic information has been promoted as the basis for “personalized” health care. We considered the benefits provided by genomic testing in context of the concept of personalized ...medicine. Materials and Methods We evaluated current and potential uses of genomic testing in health care, using prostate cancer as an example, and considered their implications for individualizing or otherwise improving health care. Results and Conclusions Personalized medicine is most accurately seen as a comprehensive effort to tailor health care to the individual, spanning multiple dimensions. While genomic tests will offer many potential opportunities to improve the delivery of care, including the potential for genomic research to offer opportunities to improve prostate cancer screening and treatment, such advances do not in themselves constitute a paradigm shift in the delivery of health care. Rather, personalized medicine is based on a partnership between clinician and patient that utilizes shared decision making to determine the best health care options among the available choices, weighing the patient’s personal values and preferences together with clinical findings. This approach is particularly important for difficult clinical decisions involving uncertainty and trade-offs, such as those involved in prostate cancer screening and management. The delivery of personalized medicine also requires adequate health care access and assurance that basic health needs have been met. Substantial research investment will be needed to identify how genomic tests can contribute to this effort.
Current approaches to genetic screening include newborn screening to identify infants who would benefit from early treatment, reproductive genetic screening to assist reproductive decision making, ...and family history assessment to identify individuals who would benefit from additional prevention measures. Although the traditional goal of screening is to identify early disease or risk in order to implement preventive therapy, genetic screening has always included an atypical element-information relevant to reproductive decisions. New technologies offer increasingly comprehensive identification of genetic conditions and susceptibilities. Tests based on these technologies are generating a different approach to screening that seeks to inform individuals about all of their genetic traits and susceptibilities for purposes that incorporate rapid diagnosis, family planning, and expediting of research, as well as the traditional screening goal of improving prevention. Use of these tests in population screening will increase the challenges already encountered in genetic screening programs, including false-positive and ambiguous test results, overdiagnosis, and incidental findings. Whether this approach is desirable requires further empiric research, but it also requires careful deliberation on the part of all concerned, including genomic researchers, clinicians, public health officials, health care payers, and especially those who will be the recipients of this novel screening approach.
About 2% of all colorectal cancer occurs in the context of the autosomal dominantly inherited Lynch syndrome, which is due to mutations in mismatch repair genes. Potential risk-reducing interventions ...are recommended for individuals known to have these mutations.
To review cancer risks and data on screening efficacy in the context of Lynch syndrome (hereditary nonpolyposis colorectal cancer) and to provide recommendations for clinical management for affected families, based on available evidence and expert opinion.
A systematic literature search using PubMed and the Cochrane Database of Systematic Reviews, reference list review of retrieved articles, manual searches of relevant articles, and direct communication with other researchers in the field. Search terms included hereditary non-polyposis colon cancer, Lynch syndrome, microsatellite instability, mismatch repair genes, and terms related to the biology of Lynch syndrome. Only peer-reviewed, full-text, English-language articles concerning human subjects published between January 1, 1996, and February 2006 were included. The US Preventive Services Task Force's 2-tier system was adapted to describe the quality of evidence and to assign strength to the recommendations for each guideline.
The evidence supports colonoscopic surveillance for individuals with Lynch syndrome, although the optimal age at initiation and frequency of examinations is unresolved. Colonoscopy is recommended every 1 to 2 years starting at ages 20 to 25 years (age 30 years for those with MSH6 mutations), or 10 years younger than the youngest age of the person diagnosed in the family. While fully acknowledging absence of demonstrated efficacy, the following are also recommended annually: endometrial sampling and transvaginal ultrasound of the uterus and ovaries (ages 30-35 years); urinalysis with cytology (ages 25-35 years); history, examination, review of systems, education and genetic counseling regarding Lynch syndrome (age 21 years). Regular colonoscopy was favored for at-risk persons without colorectal neoplasia. For individuals who will undergo surgical resection of a colon cancer, subtotal colectomy is favored. Evidence supports the efficacy of prophylactic hysterectomy and oophorectomy.
The past 10 years have seen major advances in the understanding of Lynch syndrome. Current recommendations regarding cancer screening and prevention require careful consultation between clinicians, clinical cancer genetic services, and well-informed patients.
ABSTRACT
BACKGROUND
To reduce suicides among Veterans, the Department of Veterans Affairs (VA) has designated suicide risk assessments for Veterans who screen positive for depression or ...post-traumatic stress disorder as a national performance goal. Many VA Medical Centers (VAMCs) are using brief suicidal ideation screens, administered in non-mental health ambulatory care settings, as the first step in the assessment process.
OBJECTIVE
To explore Veterans’ perceptions of the suicide screening and risk assessment process, the barriers and facilitators to disclosing suicidal thoughts, and perceptions of possible consequences of revealing suicidal thoughts.
DESIGN
Investigators recorded one semi-structured interview with each Veteran. Transcripts were analyzed using a modified grounded theory approach.
PARTICIPANTS
Thirty-four Operation Enduring Freedom/Operation Iraqi Freedom (OEF/OIF) Veterans who screened positive for suicidal ideation in non-mental health ambulatory care settings in 2009 and 2010.
KEY RESULTS
Veterans accepted the need to assess suicide risk. They increasingly experienced attempts to suppress and avoid thoughts of suicide as burdensome and exhausting. Despite this, Veterans often failed to disclose severe and pervasive suicidal thoughts when screened because: (1) they considered suicidal thoughts as shameful and a sign of weakness; (2) they believed suicidal thoughts were private and not to be divulged to strangers; (3) they worried that disclosure would lead to unwanted hospitalization or medication recommendations; and (4) the templated computer reminder process was perceived as perfunctory and disrespectful. In contrast, admitting and discussing thoughts of suicide with a health provider who focused on building a relationship, demonstrated genuineness and empathy, offered information on the rationale for suicide risk assessment, and used straightforward and understandable language, all promoted trust that resulted in more honest disclosure of suicidal thoughts.
CONCLUSION
In ambulatory care settings, both provider behaviors and system modifications may lead to more honest disclosure of suicidal thoughts.
Federally funded research on the ethical, legal, and social implications (ELSI) of genomics includes a programmatic charge to consider policy-relevant questions and to communicate findings in venues ...that help inform the policy-making process. In addressing this goal, investigators must consider the range of policies that are relevant to human genetics; how foundational research in bioethics, law, and the social sciences might inform those policies; and the potential professional issues that this translational imperative raises for ELSI investigators. We review these questions in light of experiences from a consortium of federally funded Centers of Excellence in ELSI Research, and offer a set of policy recommendations for program design and evaluation of ELSI research. We conclude that it would be a mistake to require that ELSI research programs demonstrate a direct impact on science or health policy; however, ELSI researchers can take steps to increase the relevance of their work to policy makers. Similarly, funders of ELSI research who are concerned with facilitating policy development can help by building cross-disciplinary translational research capacities, and universities can take steps to make policy-relevant research more rewarding for scholars in the humanities, social sciences, and law.
A study was done to determine the ethnic and social factors that contribute to the attitudes of pregnant women toward self-care and prenatal care. Interviews were conducted with 138 pregnant women ...residents of California wherein 32% were Mexican Americans and 68% were European Americans. Despite earlier presumptions that ethnicity and social background shape maternal dietary practices, results revealed that the women in the sample showed similar beliefs with regards to birth and pregnancy.
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