Review and Comparison of Electronic Patient-Facing Family Health History Tools.
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SUBMITTER: Welch BM
PROVIDER: S-EPMC5861014 | biostudies-literature | 2018 Apr
REPOSITORIES: biostudies-literature
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Review and Comparison of Electronic Patient-Facing Family Health History Tools.
Welch Brandon M BM Wiley Kevin K Pflieger Lance L Achiangia Rosaline R Baker Karen K Hughes-Halbert Chanita C Morrison Heath H Schiffman Joshua J Doerr Megan M
Journal of genetic counseling 20180306 2
Family health history (FHx) is one of the most important pieces of information available to help genetic counselors and other clinicians identify risk and prevent disease. Unfortunately, the collection of FHx from patients is often too time consuming to be done during a clinical visit. Fortunately, there are many electronic FHx tools designed to help patients gather and organize their own FHx information prior to a clinic visit. We conducted a review and analysis of electronic FHx tools to bette ...[more]
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Project description:Uptake of community-facing family health history (FHH) tools to identify those at highest risk of disease and target prevention efforts has been consistently low. This review uses the diffusion of innovations (DOI) as a framework to organize the FHH evidence base and identify potential strategies to improve uptake of community-facing FHH tools. Methods for this literature review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines. We completed systematic searches in PubMed, Embase, and Web of Science databases for studies from 2009 to 2017 and hand searched bibliographies of relevant literature to identify additional articles. We abstracted and synthesized results, which were then organized by the DOI including the innovation-decision making process and characteristics of the innovation likely to influence diffusion (e.g., compatibility, relative advantage, complexity, trialability, observa/bility). Of the 290 unique articles identified, 65 were eligible for full-text review after title and abstract screening; a total of 27 were included in the final abstraction. Eleven unique tools were identified. The most commonly used tool was the Surgeon General's My Family Health Portrait (n =9/27). Only six studies directly evaluated participant perceptions shown to be associated with tool uptake. Studies tended to focus on improving compatibility by customizing tools to the target population's needs and use of educational interventions. Results from this review suggest the need to evaluate strategies to increase the pace of uptake of community-facing FHH tools. These include pragmatic trials that compare different approaches to engage and evaluate participant perceptions of the relative advantage and complexity of tools. Ancillary support strategies may include collaborations with community networks to facilitate use and implementation study designs for rigorous evaluation.
| S-EPMC7062972 | biostudies-literature
Project description:BACKGROUND:Studies have shown that the quality of family health history (FHH) collection in primary care is inadequate to assess disease risk. To use FHH for risk assessment, collected data must have adequate detail. To address this issue, we developed a patient facing FHH assessment tool, MeTree. In this paper we report the content and quality of the FHH collected using MeTree. METHODS: DESIGN:A hybrid implementation-effectiveness study. Patients were recruited from 2009 to 2012. SETTING:Two community primary care clinics in Greensboro, NC. PARTICIPANTS:All non-adopted adult English speaking patients with upcoming appointments were invited to participate. INTERVENTION:Education about and collection of FHH with entry into MeTree. MEASURES:We report the proportion of pedigrees that were high-quality. High-quality pedigrees are defined as having all the following criteria: (1) three generations of relatives, (2) relatives' lineage, (3) relatives' gender, (4) an up-to-date FHH, (5) pertinent negatives noted, (6) age of disease onset in affected relatives, and for deceased relatives, (7) the age and (8) cause of death (Prim Care31:479-495, 2004.). RESULTS:Enrollment: 1,184. Participant demographics: age range 18-92 (mean 58.8, SD 11.79), 56% male, and 75% white. The median pedigree size was 21 (range 8-71) and the FHH entered into MeTree resulted in a database of 27,406 individuals. FHHs collected by MeTree were found to be high quality in 99.8% (N = 1,182/1,184) as compared to <4% at baseline. An average of 1.9 relatives per pedigree (range 0-50, SD 4.14) had no data reported. For pedigrees where at least one relative has no data (N = 497/1,184), 4.97 relatives per pedigree (range 1-50, SD 5.44) had no data. Talking with family members before using MeTree significantly decreased the proportion of relatives with no data reported (4.98% if you talked to your relative vs. 10.85% if you did not, p-value < 0.001.). CONCLUSION:Using MeTree improves the quantity and quality of the FHH data that is collected and talking with relatives prior to the collection of FHH significantly improves the quantity and quality of the data provided. This allows more patients to be accurately risk stratified and offered appropriate preventive care guided by their risk level. TRIAL NUMBER:NCT01372553.
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Project description:There is growing interest in developing systems to overcome barriers for acquiring and interpreting family health histories in primary care.To examine the capacity of three different electronic portals to collect family history from patients and deposit valid data in an electronic health record (EHR).Pilot trial.Patients were enrolled from four primary care practices and were asked to collect family health history before a physical exam using either telephone-based interactive voice response (IVR) technology, a secure Internet portal, or a waiting room laptop computer, with portal assigned by practice. Intervention practices were compared to a "usual care" practice, where there was no standard workflow to document family history (663 participants in the three intervention arms were compared to 296 participants from the control practice).New documentation of any family history in a coded EHR field within 30 days of the visit. Secondary outcomes included participation rates and validity.Demographics varied by clinic. Documentation of new family history data was significantly higher, but modest, in each of the three intervention clinics (7.5 % for IVR clinic, 20.3 % for laptop clinic, and 23.1 % for patient portal clinic) versus the control clinic (1.7 %). Patient-entered data on common conditions in first degree relatives was confirmed as valid by a genetic counselor for the majority of cases (ranging from 64 to 82 % in the different arms).Within primary care practices, valid patient entered family health history data can be obtained electronically at higher rates than a standard of care that depends on provider-entered data. Further research is needed to determine how best to match different portals to individual patient preference, how the tools can best be integrated with provider workflow, and to assess how they impact the use of screening and prevention.
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Project description:BackgroundMany medical family history (FH) tools are available for various settings. Although FH tools can be a powerful health screening tool in primary care (PC), they are currently underused.ObjectivesThis review explores the FH tools currently available for PC and evaluates their clinical performance.MethodsFive databases were systematically searched until May 2021. Identified tools were evaluated on the following criteria: time-to-complete, integration with electronic health record (EMR) systems, patient administration, risk-assessment ability, evidence-based management recommendations, analytical and clinical validity and clinical utility.ResultsWe identified 26 PC FH tools. Analytical and clinical validity was poorly reported and agreement between FH and gold standard was commonly inadequately reported and assessed. Sensitivity was acceptable; specificity was found in half of the reviewed tools to be poor. Most reviewed tools showed a capacity to successfully identify individuals with increased risk of disease (6.2-84.6% of high and/or moderate or increased risk individuals).ConclusionDespite the potential of FH tools to improve risk stratification of patients in PC, clinical performance of current tools remains limited as well as their integration in EMR systems. Twenty-one FH tools are designed to be self-administered by patients.
| S-EPMC9090347 | biostudies-literature
Project description:IntroductionFamily health history can be a valuable indicator of risk to develop certain cancers. Unfortunately, patient self-reported family history often contains inaccuracies, which might change recommendations for cancer screening. We endeavored to understand the difference between a patient's self-reported family history and their electronic medical record (EMR) family history. One aim of this study was to determine if family history information contained in the EMR differs from patient-reported family history collected using a focused questionnaire.MethodsWe created the Hereditary Cancer Questionnaire (HCQ) based on current guidelines and distributed to 314 patients in the Department of Family Medicine waiting room June 20 to August 1, 2018. The survey queried patients about specific cancers within their biological family to assess their risk of an inherited cancer syndrome. We used the questionnaire responses as a baseline when comparing family histories in the medical record.ResultsAgreement between the EMR and the questionnaire data decreased as the patients' risk for familial cancer increased. Meaning that the more significant a patient's family cancer history, the less likely it was to be recorded accurately and consistently in the EMR. Patients with low-risk levels, or fewer instances of cancer in the family, had more consistencies between the EMR and the questionnaire.ConclusionsGiven that physicians often make recommendations on incomplete information that is in the EMR, patients might not receive individualized preventive care based on a more complete family cancer history. This is especially true for individuals with more complicated and significant family history of cancer. An improved method of collecting family history, including increasing patient engagement, may help to decrease this disparity.
| S-EPMC8796064 | biostudies-literature
Project description:BackgroundThere is widespread agreement on the promise of patient-facing digital health tools to transform health care. Yet, few tools are in widespread use or have documented clinical effectiveness.ObjectiveThe aim of this study was to gain insight into the gap between the potential of patient-facing digital health tools and real-world uptake.MethodsWe interviewed and surveyed experts (in total, n=24) across key digital health stakeholder groups-venture capitalists, digital health companies, payers, and health care system providers or leaders-guided by the Consolidated Framework for Implementation Research.ResultsOur findings revealed that external policy, regulatory demands, internal organizational workflow, and integration needs often take priority over patient needs and patient preferences for digital health tools, which lowers patient acceptance rates. We discovered alignment, across all 4 stakeholder groups, in the desire to engage both patients and frontline health care providers in broader dissemination and evaluation of digital health tools. However, major areas of misalignment between stakeholder groups have stymied the progress of digital health tool uptake-venture capitalists and companies focused on external policy and regulatory demands, while payers and providers focused on internal organizational workflow and integration needs.ConclusionsMisalignment of the priorities of digital health companies and their funders with those of providers and payers requires direct attention to improve uptake of patient-facing digital health tools and platforms.
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Project description:ObjectiveThe collection and use of a family health history are important for assessing the patient's risk of disease, but history taking is often impeded by practical barriers in the office. Provision for patient-computer dialogue, linked with the electronic health record, may enable patients to contribute their history while bypassing these barriers. We sought to assess the patient experience using such a tool.Materials and methodsWe linked the family history module of a computer-based medical history to the patient portal of a large academic health system. The interview consisted of 39 primary questions with a predetermined high test-retest reliability. Patients' results were structured and summarized, and available within their electronic health record. Patients optionally completed a survey about their experience. We inductively analyzed free-text responses collected between 2014 and 2016.ResultsAmong 97 781 patient portal users, 9562 patients accessed and 4223 patients completed the family medical history interview. Of these patients, 1451 completed our survey. Main themes that were identified included (1) patient empowerment, (2) anticipated value, (3) validity concerns, (4) privacy concerns, and (5) reflections on patient-computer dialogue. Patients also provided suggestions for the improvement of future family history tools.DiscussionPatients providing their family health information is an example of collaborative electronic work with clinicians and was seen as valuable by those who participated. Concerns related to contextual information and uncertainty need to be addressed.ConclusionsPatient-computer dialogue to collect family medical history empowered patients and added perceived value and efficiency to the patient experience of care.
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Project description:BackgroundThe prognosis, diagnosis, and treatment of many genetic disorders and familial diseases significantly improve if the family history (FH) of a patient is known. Such information is often written in the free text of clinical notes.ObjectiveThe aim of this study is to develop automated methods that enable access to FH data through natural language processing.MethodsWe performed information extraction by using transformers to extract disease mentions from notes. We also experimented with rule-based methods for extracting family member (FM) information from text and coreference resolution techniques. We evaluated different transfer learning strategies to improve the annotation of diseases. We provided a thorough error analysis of the contributing factors that affect such information extraction systems.ResultsOur experiments showed that the combination of domain-adaptive pretraining and intermediate-task pretraining achieved an F1 score of 81.63% for the extraction of diseases and FMs from notes when it was tested on a public shared task data set from the National Natural Language Processing Clinical Challenges (N2C2), providing a statistically significant improvement over the baseline (P<.001). In comparison, in the 2019 N2C2/Open Health Natural Language Processing Shared Task, the median F1 score of all 17 participating teams was 76.59%.ConclusionsOur approach, which leverages a state-of-the-art named entity recognition model for disease mention detection coupled with a hybrid method for FM mention detection, achieved an effectiveness that was close to that of the top 3 systems participating in the 2019 N2C2 FH extraction challenge, with only the top system convincingly outperforming our approach in terms of precision.
| S-EPMC8092929 | biostudies-literature
Project description:BACKGROUND:The National Health Service (NHS) Long-Term Plan has set out a vision of enabling patients to access digital interactions with health care professionals within 5 years, including by video link. OBJECTIVE:This review aimed to examine the extent and nature of the use of patient-facing teleconsultations within a health care setting in the United Kingdom and what outcome measures have been assessed. METHODS:We conducted a systematic scoping review of teleconsultation studies following the Joanna Briggs Institute methodology. PubMed, Scopus, the Cochrane Library, and the Cumulative Index to Nursing and Allied Health Literature were searched up to the end of December 2018 for publications that reported on the use of patient-facing teleconsultations in a UK health care setting. RESULTS:The search retrieved 3132 publications, of which 101 were included for a full review. Overall, the studies were heterogeneous in design, in the specialty assessed, and reported outcome measures. The technology used for teleconsultations changed over time with earlier studies employing bespoke, often expensive, solutions. Two-thirds of the studies, conducted between 1995 and 2005, used this method. Later studies transitioned to Web-based commercial solutions such as Skype. There were five outcome measures that were assessed: (1) technical feasibility, (2) user satisfaction, (3) clinical effectiveness, (4) cost, (5) logistical and operational considerations. Due to the changing nature of technology over time, there were differing technical issues across the studies. Generally, teleconsultations were acceptable to patients, but this was less consistent among health care professionals. However, among both groups, face-to-face consultations were still seen as the gold standard. A wide range of clinical scenarios found teleconsultations to be clinically useful but potentially limited to more straightforward clinical interactions. Due to the wide array of study types and changes in technology over time, it is difficult to draw definitive conclusions on the cost involved. However, cost savings for health care providers have been demonstrated by the goal-directed implementation of teleconsultations. The integration of technology into routine practice represents a complex problem with barriers identified in funding and hospital reimbursement, information technologies infrastructure, and integration into clinicians' workflow. CONCLUSIONS:Teleconsultations appear to be safe and effective in the correct clinical situations. Where offered, it is likely that patients will be keen to engage, although teleconsultations should only be offered as an option to support traditional care models rather than replace them outright. Health care staff should be encouraged and supported in using teleconsultations to diversify their practice. Health care organizations need to consider developing a digital technology strategy and implementation groups to assist health care staff to integrate digitally enabled care into routine practice. The introduction of new technologies should be assessed after a set period with service evaluations, including feedback from key stakeholders.
| S-EPMC7105931 | biostudies-literature