Alexander H. Krist

Harmonized patient-reported data elements in the electronic health record: supporting meaningful use by primary care action on health behaviors and key psychosocial factors

BACKGROUND Electronic health records (EHR) have the potential to improve patient care through efficient access to complete patient health information. This potential may not be reached because many of the most important determinants of health outcome are rarely included. Successful health promotion and disease prevention requires patient-reported data reflecting health behaviors and psychosocial issues. Furthermore, there is a need to harmonize this information across different EHR systems. METHODS To fill this gap a three-phased process was used to conceptualize, identify and recommend patient-reported data elements on health behaviors and psychosocial factors for the EHR. Expert panels (n=13) identified candidate measures (phase 1) that were reviewed and rated by a wide range of health professionals (n=93) using the grid-enabled measures wiki social media platform (phase 2). Recommendations were finalized through a town hall meeting with key stakeholders including patients, providers, researchers, policy makers, and representatives from healthcare settings (phase 3). RESULTS Nine key elements from three areas emerged as the initial critical patient-reported elements to incorporate systematically into EHR--health behaviors (eg, exercise), psychosocial issues (eg, distress), and patient-centered factors (eg, demographics). Recommendations were also made regarding the frequency of collection ranging from a single assessment (eg, demographic characteristics), to annual assessment (eg, health behaviors), or more frequent (eg, patient goals). CONCLUSIONS There was strong stakeholder support for this initiative reflecting the perceived value of incorporating patient-reported elements into EHR. The next steps will include testing the feasibility of incorporating these elements into the EHR across diverse primary care settings.

Electronic health record functionality needed to better support primary care

Electronic health records (EHRs) must support primary care clinicians and patients, yet many clinicians remain dissatisfied with their system. This article presents a consensus statement about gaps in current EHR functionality and needed enhancements to support primary care. The Institute of Medicine primary care attributes were used to define needs and meaningful use (MU) objectives to define EHR functionality. Current objectives remain focused on disease rather than the whole person, ignoring factors such as personal risks, behaviors, family structure, and occupational and environmental influences. Primary care needs EHRs to move beyond documentation to interpreting and tracking information over time, as well as patient-partnering activities, support for team-based care, population-management tools that deliver care, and reduced documentation burden. While stage 3 MUs focus on outcomes is laudable, enhanced functionality is still needed, including EHR modifications, expanded use of patient portals, seamless integration with external applications, and advancement of national infrastructure and policies.

The development of a web- and a print-based decision aid for prostate cancer screening

BackgroundWhether early detection and treatment of prostate cancer (PCa) will reduce disease-related mortality remains uncertain. As a result, tools are needed to facilitate informed decision making. While there have been several decision aids (DAs) developed and tested, very few have included an exercise to help men clarify their values and preferences about PCa screening. Further, only one DA has utilized an interactive web-based format, which allows for an expansion and customization of the material. We describe the development of two DAs, a booklet and an interactive website, each with a values clarification component and designed for use in diverse settings.MethodsWe conducted two feasibility studies to assess mens (45-70 years) Internet access and their willingness to use a web- vs. a print-based tool. The booklet was adapted from two previous versions evaluated in randomized controlled trials (RCTs) and the website was created to closely match the content of the revised booklet. Usability testing was conducted to obtain feedback regarding draft versions of the materials. The tools were also reviewed by a plain language expert and the interdisciplinary research team. Feedback on the content and presentation led to iterative modifications of the tools.ResultsThe feasibility studies confirmed that the Internet was a viable medium, as the majority of men used a computer, had access to the Internet, and Internet use increased over time. Feedback from the usability testing on the length, presentation, and content of the materials was incorporated into the final versions of the booklet and website. Both the feasibility studies and the usability testing highlighted the need to address mens informed decision making regarding screening.ConclusionsInformed decision making for PCa screening is crucial at present and may be important for some time, particularly if a definitive recommendation either for or against screening does not emerge from ongoing prostate cancer screening trials. We have detailed our efforts at developing print- and web-based DAs to assist men in determining how to best meet their PCa screening preferences. Following completion of our ongoing RCT designed to test these materials, our goal will be to develop a dissemination project for the more effective tool.Trial RegistrationNCT00623090

How patients want to engage with their personal health record: a qualitative study

Objective To assess factors related to use and non-use of a sophisticated interactive preventive health record (IPHR) designed to promote uptake of 18 recommended clinical preventive services; little is known about how patients want to use or be engaged by such advanced information tools. Design Descriptive and interpretive qualitative analysis of transcripts and field notes from focus groups of the IPHR users and of patients who were invited but did not use the IPHR (non-users). Grounded theory techniques were then applied via an editing approach for key emergent themes. Setting Primary care patients in eight practices of the Virginia Ambulatory Care Outcomes Research Network (ACORN). Participants Three focus groups involved a total of 14 IPHR users and two groups of non-users totalled 14 participants. Outcomes/results For themes identified (relevance, trust and functionality) participants indicated that endorsement and use of the IPHR by their personal clinician was vital. In particular, participants’ comments linked the IPHR use to: (1) integrating the IPHR into current care, (2) promoting effective patient–clinician encounters and communication and (3) their confidence in the accuracy, security and privacy of the information. Conclusions In addition to patients’ stated desires for advanced functionality and information accuracy and privacy, successful adoption of the IPHRs by primary care patients depends on such technologys relevance, and on its promotion via integration with primary care practices’ processes and the patient–clinician relationship. Accordingly, models of technological success and adoption, when applied to primary care, may need to include the patient–clinician relationship and practice workflow. These findings are important for healthcare providers, the information technology industry and policymakers who share an interest in encouraging patients to use personal health records. Trial Registration Clinicaltrials.gov identifier: NCT00589173

Agreement of Medicaid claims and electronic health records for assessing preventive care quality among adults.

To compare the agreement of electronic health record (EHR) data versus Medicaid claims data in documenting adult preventive care. Insurance claims are commonly used to measure care quality. EHR data could serve this purpose, but little information exists about how this source compares in service documentation. For 13 101 Medicaid-insured adult patients attending 43 Oregon community health centers, we compared documentation of 11 preventive services, based on EHR versus Medicaid claims data. Documentation was comparable for most services. Agreement was highest for influenza vaccination (κ =  0.77; 95% CI 0.75 to 0.79), cholesterol screening (κ = 0.80; 95% CI 0.79 to 0.81), and cervical cancer screening (κ = 0.71; 95% CI 0.70 to 0.73), and lowest on services commonly referred out of primary care clinics and those that usually do not generate claims. EHRs show promise for use in quality reporting. Strategies to maximize data capture in EHRs are needed to optimize the use of EHR data for service documentation.

Practice-based Research Networks (PBRNs) Are Promising Laboratories for Conducting Dissemination and Implementation Research

Dissemination and implementation science addresses the application of research findings in varied health care settings. Despite the potential benefit of dissemination and implementation work to primary care, ideal laboratories for this science have been elusive. Practice-based research networks (PBRNs) have a long history of conducting research in community clinical settings, demonstrating an approach that could be used to execute multiple research projects over time in broad and varied settings. PBRNs also are uniquely structured and increasingly involved in pragmatic trials, a research design central to dissemination and implementation science. We argue that PBRNs and dissemination and implementation scientists are ideally suited to work together and that the collaboration of these 2 groups will yield great value for the future of primary care and the delivery of evidence-based health care.

The KinFact Intervention – A Randomized Controlled Trial to Increase Family Communication About Cancer History

BACKGROUND Knowing family history is important for understanding cancer risk, yet communication within families is suboptimal. Providing strategies to enhance communication may be useful. METHODS Four hundred ninety women were recruited from urban, safety-net, hospital-based primary care womens health clinics. Participants were randomized to receive the KinFact intervention or the control handout on lowering risks for breast/colon cancer and screening recommendations. Cancer family history was reviewed with all participants. The 20-minute KinFact intervention, based in communication and behavior theory, included reviewing individualized breast/colon cancer risks and an interactive presentation about cancer and communication. Study outcomes included whether participants reported collecting family history, shared cancer risk information with relatives, and the frequency of communication with relatives. Data were collected at baseline, 1, 6, and 14 months. RESULTS Overall, intervention participants were significantly more likely to gather family cancer information at follow-up (odds ratio [OR]: 2.73; 95% confidence interval [CI]: 2.01, 3.71) and to share familial cancer information with relatives (OR: 1.85; 95% CI: 1.37, 2.48). Communication frequency (1=not at all; 4=a lot) was significantly increased at follow-up (1.67 vs. 1.54). Differences were not modified by age, race, education, or family history. However, effects were modified by pregnancy status and genetic literacy. Intervention effects for information gathering and frequency were observed for nonpregnant women but not for pregnant women. Additionally, intervention effects were observed for information gathering in women with high genetic literacy, but not in women with low genetic literacy. CONCLUSIONS The KinFact intervention successfully promoted family communication about cancer risk. Educating women to enhance their communication skills surrounding family history may allow them to partner more effectively with their families and ultimately their providers in discussing risks and prevention.

Clinical outcomes of HIV care delivery models in the US: a systematic review

ABSTRACT With over 1 million people living with HIV, the US faces national challenges in HIV care delivery due to an inadequate HIV specialist workforce and the increasing role of non-communicable chronic diseases in driving morbidity and mortality in HIV-infected patients. Alternative HIV care delivery models, which include substantial roles for advanced practitioners and/or coordination between specialty and primary care settings in managing HIV-infected patients, may address these needs. We aimed to systematically review the evidence on patient-level HIV-specific and primary care health outcomes for HIV-infected adults receiving outpatient care across HIV care delivery models. We identified randomized trials and observational studies from bibliographic and other databases through March 2016. Eligible studies met pre-specified eligibility criteria including on care delivery models and patient-level health outcomes. We considered all available evidence, including non-experimental studies, and evaluated studies for risk of bias. We identified 3605 studies, of which 13 met eligibility criteria. Of the 13 eligible studies, the majority evaluated specialty-based care (9 studies). Across all studies and care delivery models, eligible studies primarily reported mortality and antiretroviral use, with specialty-based care associated with mortality reductions at the clinician and practice levels and with increased antiretroviral initiation or use at the clinician level but not the practice level. Limited and heterogeneous outcomes were reported for other patient-level HIV-specific outcomes (e.g., viral suppression) as well as for primary care health outcomes across all care delivery models. No studies addressed chronic care outcomes related to aging. Limited evidence was available across geographic settings and key populations. As re-design of care delivery in the US continues to evolve, better understanding of patient-level HIV-related and primary care health outcomes, especially across different staffing models and among different patient populations and geographic locations, is urgently needed to improve HIV disease management.