Improving Data Infrastructure for Person-Centered Outcomes Research on Intellectual and Developmental Disabilities.

Individuals with intellectual and developmental disabilities (IDD) continue to experience disparities in health and well-being despite improved provisions of person-centered care. Patient-centered outcomes research (PCOR) translates evidence into practice for meaningful outcomes. This piece describes findings from an environmental scan and stakeholder outreach to identify and prioritize opportunities to enhance IDD PCOR data infrastructure. These opportunities include developing a standardized research definition; advancing data standards for service systems; improving capture of IDD at point of care; developing standardized outcome measures; and encouraging Medicaid data use for IDD research. Within this piece, we discuss the implications of addressing data gaps for enhanced research. While the identified activities provide a path towards advancing IDD PCOR data infrastructure, collaborative efforts between government, researchers, and others are paramount.

Patient-Centered Clinical Decision Support-Where Are We and Where to Next?

Patient-centered clinical decision support (PC CDS) includes digital health tools that support patients, caregivers, and care teams in healthcare decisions that incorporate patient-centered factors related to four components: knowledge, data, delivery, and use. This paper explores the current state of each factor and how each promotes patient-centeredness in healthcare. We conducted a literature review, reviewing 175 peer-reviewed and grey literature, and eighteen key informant interviews. Findings show a need for more research on how to incorporate patient input into the guideline selection and prioritization for PC CDS, development and implementation of PC CDS tools, technical challenges for capturing patient contributed data, and optimizing PC CDS across various settings to meet patient and caregiver needs. While progress is being made in each of the four components of PC CDS, critical gaps remain.

A lifecycle framework illustrates eight stages necessary for realizing the benefits of patient-centered clinical decision support.

The design, development, implementation, use, and evaluation of high-quality, patient-centered clinical decision support (PC CDS) is necessary if we are to achieve the quintuple aim in healthcare. We developed a PC CDS lifecycle framework to promote a common understanding and language for communication among researchers, patients, clinicians, and policymakers. The framework puts the patient, and/or their caregiver at the center and illustrates how they are involved in all the following stages: Computable Clinical Knowledge, Patient-specific Inference, Information Delivery, Clinical Decision, Patient Behaviors, Health Outcomes, Aggregate Data, and patient-centered outcomes research (PCOR) Evidence. Using this idealized framework reminds key stakeholders that developing, deploying, and evaluating PC-CDS is a complex, sociotechnical challenge that requires consideration of all 8 stages. In addition, we need to ensure that patients, their caregivers, and the clinicians caring for them are explicitly involved at each stage to help us achieve the quintuple aim.

Lessons Learned from a National Initiative Promoting Publicly Available Standards-Based Clinical Decision Support.

BACKGROUND: Clinical decision support (CDS), which provides tools to assist clinical decision-making, can improve adherence to evidence-based practices, prevent medical errors, and support high-quality and patient-centered care delivery. Publicly available CDS that uses standards to express clinical logic (i.e., standards-based CDS) has the potential to reduce duplicative efforts of translating the same clinical evidence into CDS across multiple health care institutions. Yet development of such CDS is relatively new and its potential only partially explored. OBJECTIVES: This study aimed to describe lessons learned from a national initiative promoting publicly available, standards-based CDS resources, discuss challenges, and report suggestions for improvement. METHODS: Findings were drawn from an evaluation of the Agency for Healthcare Research and Quality Patient-Centered Outcomes Research CDS Initiative, which aimed to advance evidence into practice through standards-based and publicly available CDS. Methods included literature and program material reviews, key informant interviews, and a web-based survey about a public repository of CDS artifacts and tools for authoring standards-based CDS. RESULTS: The evaluation identified important lessons for developing and implementing standards-based CDS through publicly available repositories such as CDS Connect. Trust is a critical factor in uptake and can be bolstered through transparent information on underlying evidence, collaboration with experts, and feedback loops between users and developers to support continuous improvement. Additionally, while adoption of standards among electronic health record developers will make it easier to implement standards-based CDS, lower-resourced health systems will need extra support to ensure successful implementation and use. Finally, although we found the resources developed by the Initiative to offer valuable prototypes for the field, health systems desire more information about patient-centered, clinical, and cost-related outcomes to help them justify the investment required to implement standards-based, publicly available CDS. CONCLUSION: While the standards and technology to publicly share standards-based CDS have increased, broad dissemination and implementation remain challenging.

Incorporating Social Determinants of Health in Electronic Health Records: Qualitative Study of Current Practices Among Top Vendors.

BACKGROUND: Social determinants of health (SDH) are increasingly seen as important to understanding patient health and identifying appropriate interventions to improve health outcomes in what is a complex interplay between health system-, community-, and individual-level factors. OBJECTIVE: The objective of the paper was to investigate the development of electronic health record (EHR) software products that allow health care providers to identify and address patients' SDH in health care settings. METHODS: We conducted interviews with six EHR vendors with large market shares in both ambulatory and inpatient settings. We conducted thematic analysis of the interviews to (1) identify their motivations to develop such software products, (2) describe their products and uses, and (3) identify facilitators and challenges to collection and use of SDH data-through their products or otherwise-either at the point of care or in population health interventions. RESULTS: Our findings indicate that vendor systems and their functionalities are influenced by client demand and initiative, federal initiatives, and the vendors' strategic vision about opportunities in the health care system. Among the small sample of vendors with large market shares, SDH is a new area for growth, and the vendors range in the number and sophistication of their SDH-related products. To enable better data analytics, population health management, and interoperability of SDH data, vendors recognized the need for more standardization of SDH performance measures across various federal and state programs, better mapping of SDH measures to multiple types of codes, and development of more codes for all SDH measures of interest. CONCLUSIONS: Vendors indicate they are actively developing products to facilitate the collection and use of SDH data for their clients and are seeking solutions to data standardization and interoperability challenges through internal product decisions and collaboration with policymakers. Due to a lack of policy standards around SDH data, product-specific decisions may end up being de facto policies given the market shares of particular vendors. However, commercial vendors appear ready to collaboratively discuss policy solutions such as standards or guidelines with each other, health care systems, and government agencies in order to further promote integration of SDH data into the standard of care for all health systems.

Patient experience over time in patient-centered medical homes.

OBJECTIVES: Although the Patient-Centered Medical Home (PCMH) model is being implemented across the country to transform primary care, it is not yet clear whether this model actually improves patients' experiences with healthcare. Our objective was to measure patients' experiences over time in practices that transformed into PCMHs. STUDY DESIGN: We conducted a prospective study, using 2 serial cross-sectional samples, in a multipayer community. METHODS: We surveyed 715 patients: 346 at baseline, when practices had just completed transformation, and 369 at follow-up, which was a median of 15 months later. These patients received care from 120 primary care providers at 10 ambulatory practices (20 sites) that achieved Level III PCMH, as defined by the National Committee for Quality Assurance. We measured patient experience, as defined by the 7 domains of the Clinician and Group-Consumer Assessment of Healthcare Providers and Systems (CG-CAHPS) Adult Primary Care Questionnaire. RESULTS: Patients' self-reported experience with access to care improved significantly over time, with 61% of respondents giving access to care the highest rating at baseline versus 69% at follow-up (P = .02). There were no significant changes over time for the other domains. CONCLUSIONS: The PCMH was associated with improvements in patients' experience with access to care but not other domains of care. This study, which took place in a multi-payer community, is one of the first to find a positive effect of the PCMH on patient experience.

Accuracy of electronically reported "meaningful use" clinical quality measures: a cross-sectional study.

BACKGROUND: The federal Electronic Health Record Incentive Program requires electronic reporting of quality from electronic health records, beginning in 2014. Whether electronic reports of quality are accurate is unclear. OBJECTIVE: To measure the accuracy of electronic reporting compared with manual review. DESIGN: Cross-sectional study. SETTING: A federally qualified health center with a commercially available electronic health record. PATIENTS: All adult patients eligible in 2008 for 12 quality measures (using 8 unique denominators) were identified electronically. One hundred fifty patients were randomly sampled per denominator, yielding 1154 unique patients. MEASUREMENTS: Receipt of recommended care, assessed by both electronic reporting and manual review. Sensitivity, specificity, positive and negative predictive values, positive and negative likelihood ratios, and absolute rates of recommended care were measured. RESULTS: Sensitivity of electronic reporting ranged from 46% to 98% per measure. Specificity ranged from 62% to 97%, positive predictive value from 57% to 97%, and negative predictive value from 32% to 99%. Positive likelihood ratios ranged from 2.34 to 24.25 and negative likelihood ratios from 0.02 to 0.61. Differences between electronic reporting and manual review were statistically significant for 3 measures: Electronic reporting underestimated the absolute rate of recommended care for 2 measures (appropriate asthma medication [38% vs. 77%; P < 0.001] and pneumococcal vaccination [27% vs. 48%; P < 0.001]) and overestimated care for 1 measure (cholesterol control in patients with diabetes [57% vs. 37%; P = 0.001]). LIMITATION: This study addresses the accuracy of the measure numerator only. CONCLUSION: Wide measure-by-measure variation in accuracy threatens the validity of electronic reporting. If variation is not addressed, financial incentives intended to reward high quality may not be given to the highest-quality providers. PRIMARY FUNDING SOURCE: Agency for Healthcare Research and Quality.

Electronic health records and ambulatory quality of care.

CONTEXT: The US Federal Government is investing up to $29 billion in incentives for meaningful use of electronic health records (EHRs). However, the effect of EHRs on ambulatory quality is unclear, with several large studies finding no effect. OBJECTIVE: To determine the effect of EHRs on ambulatory quality in a community-based setting. DESIGN: Cross-sectional study, using data from 2008. SETTING: Ambulatory practices in the Hudson Valley of New York, with a median practice size of four physicians. PARTICIPANTS: We included all general internists, pediatricians and family medicine physicians who: were members of the Taconic Independent Practice Association, had patients in a data set of claims aggregated across five health plans, and had at least 30 patients per measure for at least one of nine quality measures selected by the health plans. INTERVENTION: Adoption of an EHR. MAIN OUTCOME MEASURES: We compared physicians using EHRs to physicians using paper on performance for each of the nine quality measures, using t-tests. We also created a composite quality score by standardizing performance against a national benchmark and averaging standardized performance across measures. We used generalized estimation equations, adjusting for nine physician characteristics. KEY RESULTS: We included 466 physicians and 74,618 unique patients. Of the physicians, 204 (44 %) had adopted EHRs and 262 (56 %) were using paper. Electronic health record use was associated with significantly higher quality of care for four of the measures: hemoglobin A1c testing in diabetes, breast cancer screening, chlamydia screening, and colorectal cancer screening. Effect sizes ranged from 3 to 13 percentage points per measure. When all nine measures were combined into a composite, EHR use was associated with higher quality of care (sd 0.4, p = 0.008). CONCLUSIONS: This is one of the first studies to find a positive association between EHRs and ambulatory quality in a community-based setting.

Health care consumers' preferences around health information exchange.

PURPOSE Consumer buy-in is important for the success of widespread federal initiatives to promote the use of health information exchange (HIE). Little is known, however, of consumers' preferences around the storing and sharing of electronic health information. We conducted a study to better understand consumer preferences regarding the privacy and security of HIE. METHODS In 2008 we conducted a cross-sectional, random digit dial telephone survey of residents in the Hudson Valley of New York State, a state where patients must affirmatively consent to having their data accessed through HIE. RESULTS There was an 85% response rate (N = 170) for the survey. Most consumers would prefer that permission be obtained before various parties, including their clinician, could view their health information through HIE. Most consumers wanted any method of sharing their health information to have safeguards in place to protect against unauthorized viewing (86%). They also wanted to be able to see who has viewed their information (86%), to stop electronic storage of their data (84%), to stop all viewing (83%), and to select which parts of their health information are shared (78%). Among the approximately one-third (n = 54) of consumers who were uncomfortable with automatic inclusion of their health information in an electronic database for HIE, 78% wished to approve all information explicitly, and most preferred restricting information by clinician (83%), visit (81%), or information type (88%). CONCLUSION Consumers in a state with an opt-in consent policy are interested in having greater control over the privacy and security of their electronic health information. These preferences should be considered when developing and implementing systems, standards and policies.

Which components of health information technology will drive financial value?

OBJECTIVES: The financial effects of electronic health records (EHRs) and health information exchange (HIE) are largely unknown, despite unprecedented federal incentives for their use. We sought to understand which components of EHRs and HIE are most likely to drive financial savings in the ambulatory, inpatient, and emergency department settings. STUDY DESIGN: Framework development and a national expert panel. METHODS: We searched the literature to identify functionalities enabled by EHRs and HIE across the 3 healthcare settings. We rated each of 233 functionality-setting combinations on their likelihood of having a positive financial effect. We validated the top-scoring functionalities with a panel of 28 national experts, and we compared the high-scoring functionalities with Stage 1 meaningful use criteria. RESULTS: We identified 54 high-scoring functionality- setting combinations, 27 for EHRs and 27 for HIE. Examples of high-scoring functionalities included providing alerts for expensive medications, providing alerts for redundant lab orders, sending and receiving imaging reports, and enabling structured medication reconciliation. Of the 54 high-scoring functionalities, 25 (46%) are represented in Stage 1 meaningful use. Many of the functionalities not yet represented in meaningful use correspond with functionalities that focus directly on healthcare utilization and costs rather than on healthcare quality per se. CONCLUSIONS: This work can inform the development and selection of future meaningful use measures; inform implementation efforts, as clinicians and hospitals choose from among a "menu" of measures for meaningful use; and inform evaluation efforts, as investigators seek to measure the actual financial impact of EHRs and HIE.

Consumer support for health information exchange and personal health records: a regional health information organization survey.

In order to characterize consumer support for electronic health information exchange (HIE) and personal health records (PHRs) in a community where HIE is underway, we conducted a survey of English speaking adults who visited primary care practices participating in a regional community-wide clinical data exchange, during August, 2008. Amongst the 117 respondents, a majority supported physicians' use of HIE (83%) or expressed interest in potentially using PHRs (76%). Consumers' comfort sending personal information electronically over the Internet and their perceptions regarding the potential benefits of HIE were independently associated with their support for HIE. Consumers' prior experience using the Internet to manage their healthcare, perceptions regarding the potential benefits of PHRs and college education were independently associated with potential PHR use. Bolstering consumer support for HIE and PHRs will require addressing privacy and security concerns, demonstrating clinical benefits, and reaching out to those who are less educated and computer literate.

Evaluating health information technology in community-based settings: lessons learned.

Implementing health information technology (IT) at the community level is a national priority to help improve healthcare quality, safety, and efficiency. However, community-based organizations implementing health IT may not have expertise in evaluation. This study describes lessons learned from experience as a multi-institutional academic collaborative established to provide independent evaluation of community-based health IT initiatives. The authors' experience derived from adapting the principles of community-based participatory research to the field of health IT. To assist other researchers, the lessons learned under four themes are presented: (A) the structure of the partnership between academic investigators and the community; (B) communication issues; (C) the relationship between implementation timing and evaluation studies; and (D) study methodology. These lessons represent practical recommendations for researchers interested in pursuing similar collaborations.

Low-income, ethnically diverse consumers' perspective on health information exchange and personal health records.

We surveyed low-income, ethnically diverse consumers regarding their attitudes towards providers' use of electronic health information exchange (HIE) and consumer use of HIE through personal health records (PHRs). Amongst respondents (n=214), 48% had an annual household income below $15,000 and 62% spoke a language other than English at home. A majority indicated that they supported providers' use of HIE (61%). Support for providers' use of HIE was independently associated with consumer willingness to permit health care providers other than their primary care doctor to view their electronic medical record information (odds ratio (OR)=2.92, 95% confidence interval (CI)=1.31-6.50) and beliefs that electronic health record use would improve quality of care (OR=2.70, 95% CI=1.18-6.18). Seventy-eight percent would potentially use PHRs. Potential PHR use was independently associated with Internet usage rates, (OR=4.46, 95% CI=1.77-11.22), belief that PHR use would improve their understanding of their own healthcare (OR=3.12, 95% CI=1.27-7.67) and comfort with sharing PHR data with their primary care doctor (OR=2.79, 95% CI=1.09-7.11). Low-income, ethnically diverse consumers affected by interoperable health information technology (IT) initiatives largely support using PHRs and HIE, provided these systems demonstrate benefits and address the privacy and security of their electronic health information. Although we found interest in PHRs comparable or higher than nationally representative populations, support for HIE was lower, and thus efforts will need to be made to engage low-income and ethnically diverse consumers to participate in interoperable health IT initiatives.

Consumer attitudes toward personal health records in a beacon community.

OBJECTIVE: To characterize consumers' attitudes about personal health records (PHRs), electronic tools that enable consumers to securely access, manage, and share their health information, in a community participating in health information technology initiatives. STUDY DESIGN: Cross-sectional study. METHODS: A random-digit-dial telephone survey about PHRs was conducted among adult residents of New York State's greater Buffalo region. Multivariate regression analyses identified factors associated with potential PHR use. RESULTS: We obtained a 79% (n = 200) response rate. Many respondents (70%) would potentially use PHRs. Consumers wanted PHRs to incorporate an array of information, including immunization records (89%) and providers visited (88%). They expressed interest in several online activities, including accessing their family members' healthcare information (71%). Potential PHR use was associated with perceptions that PHRs would improve privacy and security of medical information (odds ratio [OR] 4.7; 95% confidence interval [CI] 1.1, 20.1), understanding regarding health (OR 3.7; 95% CI 1.3, 11.1), and overall quality of care (OR 3.6; 95% CI 1.2, 10.6). Potential PHR use was associated with annual household income of more than $30,000 (OR 3.9; 95% CI 1.3, 11.9) and experience looking up health information online (OR 3.0; 95% CI 1.1, 8.1). CONCLUSIONS: Consumers expressed great interest in using PHRs and wanted comprehensive PHRs. However, the "digital divide" between those with varying levels of Internet experience and concerns about PHRs' effect on privacy and security of medical information may limit use. Designing PHRs that incorporate consumer preferences and developing policies that address these barriers may increase consumers' PHR use.

Healthcare consumers' attitudes towards physician and personal use of health information exchange.

BACKGROUND: Health information exchange (HIE), the electronic transmission of patient medical information across healthcare institutions, is on the forefront of the national agenda for healthcare reform. As healthcare consumers are critical participants in HIE, understanding their attitudes toward HIE is essential. OBJECTIVE: To determine healthcare consumers' attitudes toward physician and personal use of HIE, and factors associated with their attitudes. DESIGN: Cross-sectional telephone survey. PARTICIPANTS: English-speaking residents of the Hudson Valley of New York. MAIN MEASURE: Consumer reported attitudes towards HIE. KEY RESULTS: Of 199 eligible residents contacted, 170 (85%) completed the survey: 67% supported physician HIE use and 58% reported interest in using HIE themselves. Multivariate analysis suggested supporters of physician HIE were more likely to be caregivers for chronically ill individuals (OR 4.6, 95% CI 1.06, 19.6), earn more than $100,000 yearly (OR 3.5, 95% CI 1.2, 10.0), and believe physician HIE would improve the privacy and security of their medical records (OR 2.9, 95% CI 1.05, 7.9). Respondents interested in using personal HIE were less likely to be female (OR 0.4, 95% CI 0.1, 0.98), and more likely to be frequent Internet-users (OR 3.3, 95% CI 1.03, 10.6), feel communication among their physicians was inadequate (OR 6.7, 95% CI 1.7, 25.3), and believe personal HIE use would improve communication with their physicians (OR 4.7, 95% CI 1.7, 12.8). CONCLUSIONS: Consumer outreach to gain further support for ongoing personal and physician HIE efforts is needed and should address consumer security concerns and potential disparities in HIE acceptance and use.

User experiences with pharmacy benefit manager data at the point of care.

OBJECTIVE: MedsInfo-ED is a model health information exchange project for a network of emergency departments (EDs) in the state of Massachusetts. In this initiative, claims data from pharmacy benefit managers (PBMs) were made available at the point of care to clinicians in the EDs. We performed a qualitative assessment of respondents' experiences with MedsInfo-ED. METHODS: The assessment occurred at three pilot site EDs after implementation of MedsInfo-ED. A semi-structured interview instrument was used to collect information on strengths and weaknesses of the intervention. RESULTS: Respondents generally felt that MedsInfo-ED improved their knowledge of patients' medications. However, overall, the respondents did not believe that MedsInfo-ED decreased the time required to obtain a medication list. Workflow integration of the application differed among the three hospital sites in order to best fit their department needs. Important additional information desired by the respondents included psychiatric and HIV medications, mail order medications and medications dispensed in other countries. Suggestions for improvement included integrating the patient consent process into the workflow as well as improving medication list outputs. CONCLUSIONS: The integration of PBM data at the point of care may help improve access to and completeness of patient medication histories, although such systems need to be carefully designed and implemented.

Measuring the effects of health information technology on quality of care: a novel set of proposed metrics for electronic quality reporting.

BACKGROUND: Electronic health records (EHRs), in combination with health information exchange, are being promoted in the United States as a strategy for improving quality of care. No single metric set exists for measuring the effectiveness of these interventions. A set of quality metrics was sought that could be retrieved electronically and would be sensitive to the changes in quality that EHRs with health information exchange may contribute to ambulatory care. METHODS: A literature search identified quality metric sets for ambulatory care. Two rounds of quantitative rating of individual metrics were conducted. Metrics were developed de novo to capture additional expected effects of EHRs with health information exchange. A 36-member national expert panel validated the rating process and final metric set. RESULTS: Seventeen metric sets containing 1,064 individual metrics were identified; 510 metrics met inclusion criteria. Two rounds of rating narrowed these to 59 metrics and then to 18. The final 18 consisted of metrics for asthma, cardiovascular disease, congestive heart failure, diabetes, medication and allergy documentation, mental health, osteoporosis, and prevention. Fourteen metrics were developed de novo to address test ordering, medication management, referrals, follow-up after discharge, and revisits. DISCUSSION: The novel set of 32 metrics is proposed as suitable for electronic reporting to capture the potential quality effects of EHRs with health information exchange. This metric set may have broad utility as health information technology becomes increasingly common with funding from the federal stimulus package and other sources. This work may also stimulate discussion on improving how data are entered and extracted from clinically rich, electronic sources, with the goal of more accurately measuring and improving care.

Quality measures for capturing the effects of health information exchange.

Existing quality measures may not be sensitive to the effects of sharing clinical data across health care providers or institutions. Our objective is to develop and validate a modified set of quality measures that is: 1) sensitive to the types of improvements in quality that health IT with HIE may contribute to ambulatory care and 2) electronically retrievable from electronic health records (EHRs) or other electronic sources.