The Technology Landscape of Patient-Centered Clinical Decision Support - Where Are We and What Is Needed?

Patient Centered Outcomes Research (PCOR) and health care delivery system transformation require investments in development of tools and techniques for rapid dissemination of clinical and operational best practices. This paper explores the current technology landscape for patient-centered clinical decision support (PC CDS) and what is needed to make it more shareable, standards-based, and publicly available with the goal of improving patient care and clinical outcomes. The landscape assessment used three sources of information: (1) a 22-member technical expert panel; (2) a literature review of peer-reviewed and grey literature; and (3) key informant interviews with PC CDS stakeholders. We identified ten salient technical considerations that span all phases of PC CDS development; our findings suggest there has been significant progress in the development and implementation of PC CDS but challenges remain.

Challenges and opportunities for advancing patient-centered clinical decision support: findings from a horizon scan.

OBJECTIVE: We conducted a horizon scan to (1) identify challenges in patient-centered clinical decision support (PC CDS) and (2) identify future directions for PC CDS. MATERIALS AND METHODS: We engaged a technical expert panel, conducted a scoping literature review, and interviewed key informants. We qualitatively analyzed literature and interview transcripts, mapping findings to the 4 phases for translating evidence into PC CDS interventions (Prioritizing, Authoring, Implementing, and Measuring) and to external factors. RESULTS: We identified 12 challenges for PC CDS development. Lack of patient input was identified as a critical challenge. The key informants noted that patient input is critical to prioritizing topics for PC CDS and to ensuring that CDS aligns with patients' routine behaviors. Lack of patient-centered terminology standards was viewed as a challenge in authoring PC CDS. We found a dearth of CDS studies that measured clinical outcomes, creating significant gaps in our understanding of PC CDS' impact. Across all phases of CDS development, there is a lack of patient and provider trust and limited attention to patients' and providers' concerns. DISCUSSION: These challenges suggest opportunities for advancing PC CDS. There are opportunities to develop industry-wide practices and standards to increase transparency, standardize terminologies, and incorporate patient input. There is also opportunity to engage patients throughout the PC CDS research process to ensure that outcome measures are relevant to their needs. CONCLUSION: Addressing these challenges and embracing these opportunities will help realize the promise of PC CDS-placing patients at the center of the healthcare system.

The technical landscape for patient-centered CDS: progress, gaps, and challenges.

Supporting healthcare decision-making that is patient-centered and evidence-based requires investments in the development of tools and techniques for dissemination of patient-centered outcomes research findings via methods such as clinical decision support (CDS). This article explores the technical landscape for patient-centered CDS (PC CDS) and the gaps in making PC CDS more shareable, standards-based, and publicly available, with the goal of improving patient care and clinical outcomes. This landscape assessment used: (1) a technical expert panel; (2) a literature review; and (3) interviews with 18 CDS stakeholders. We identified 7 salient technical considerations that span 5 phases of PC CDS development. While progress has been made in the technical landscape, the field must advance standards for translating clinical guidelines into PC CDS, the standardization of CDS insertion points into the clinical workflow, and processes to capture, standardize, and integrate patient-generated health data.

Potential Uses of Blockchain Technology for Outcomes Research on Opioids.

The scale and severity of the opioid epidemic call for innovative, multipronged solutions. Research and development is key to accelerate the discovery and evaluation of interventions that support pain and substance use disorder management. In parallel, the use and integration of blockchain technology within research networks holds the potential to address some of the unique challenges facing opioid research. This paper discusses the applications of blockchain technology and illustrates potential ways in which it could be applied to strengthen the validity of outcomes research on the opioid epidemic. We reviewed published and gray literature to identify useful applications of blockchain, specifically those that address the challenges faced by opioid research networks and programs. We then convened a panel of experts to discuss the strengths, limitations, and feasibility of each application. Blockchain has the potential to address some of the issues surrounding health data management, including data availability, data sharing and interoperability, and privacy and security. We identified five primary applications of blockchain to opioids: clinical trials and pharmaceutical research, incentivizing data donation and behavior change, secure exchange and management of e-prescriptions, supply chain management, and secondary use of clinical data for research and public health surveillance. The published literature was limited, leading us to rely on gray literature, which was also limited in its discussion of the technical aspects of implementation. The technical expert panel provided additional context and an assessment of feasibility that was lacking in the literature. Research on opioid use and misuse is challenging because of disparate data stored across different systems, data and system interoperability issues, and legal requirements. These areas must be navigated to make data accessible, timely, and useful to researchers. Blockchain technologies have the potential to act as a facilitator in this process, offering a more efficient, secure, and privacy-preserving solution for data exchange. Among the 5 primary applications, we found that clinical trial research, supply chain management, and secondary use of data had the most examples in practice and the potential effectiveness of blockchain. More discussions and studies should focus on addressing technical questions concerning scalability and tackling practical concerns such as cost, standards, and governance around the implementation of blockchain in health care. Policy concerns related to balancing the need for data accessibility that also protects patient privacy and autonomy in revoking consent should also be examined.

Application Programming Interfaces in Health Care: Findings from a Current-State Sociotechnical Assessment.

OBJECTIVE: Interest in application programming interfaces (APIs) is increasing as key stakeholders look for technical solutions to interoperability challenges. We explored three thematic areas to assess the current state of API use for data access and exchange in health care: (1) API use cases and standards; (2) challenges and facilitators for read and write capabilities; and (3) outlook for development of write capabilities. METHODS: We employed four methods: (1) literature review; (2) expert interviews with 13 API stakeholders; (3) review of electronic health record (EHR) app galleries; and (4) a technical expert panel. We used an eight-dimension sociotechnical model to organize our findings. RESULTS: The API ecosystem is complicated and cuts across five of the eight sociotechnical model dimensions: (1) app marketplaces support a range of use cases, the majority of which target providers' needs, with far fewer supporting patient access to data; (2) current focus on read APIs with limited use of write APIs; (3) where standards are used, they are largely Fast Healthcare Interoperability Resources (FHIR); (4) FHIR-based APIs support exchange of electronic health information within the common clinical data set; and (5) validating external data and data sources for clinical decision making creates challenges to provider workflows. CONCLUSION: While the use of APIs in health care is increasing rapidly, it is still in the pilot stages. We identified five key issues with implications for the continued advancement of API use: (1) a robust normative FHIR standard; (2) expansion of the common clinical data set to other data elements; (3) enhanced support for write implementation; (4) data provenance rules; and (5) data governance rules. Thus, while APIs are being touted as a solution to interoperability challenges, they remain an emerging technology that is only one piece of a multipronged approach to data access and use.

Application Programming Interfaces (APIs) in Health Care: Findings from a Current-State Assessment.

Interest in application programming interfaces (APIs) as a means to increase health data access and exchange among patients, health care providers, and payers has become an important area for development. In an effort to better understand the various contexts in which APIs can be applied, we explored different use cases. While APIs and our collective understanding of the best ways to implement and use them continue to develop, in the coming years the use of proprietary and standards-based APIs could be key to the sustainability of applied clinical informatics research, as well as associated improvements in patient engagement, clinical decision making, efficiency, quality and safety of the healthcare delivery system.

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.

Large scale health information exchange: implementation experiences from five states.

There is widespread consensus that Health Information Exchange, the electronic sharing of patients' health information between delivery settings, is critical to improving the quality and efficiency of patient care. The United States has had limited success in establishing broad-based HIE. To address these issues, the federal government funded the State Health Information Exchange Cooperative Agreement Program. An in-depth qualitative study was conducted, consisting of site visits and semi-structured discussions with 105 respondents in 5 states to understand early HIE implementation experiences. Results show the last two years have seen unprecedented growth in HIE infrastructure. Key factors such as maturity of HIE at baseline and healthcare market characteristics have shaped governance models and technical infrastructures. Early focus on stakeholder value proposition and sustainability planning is critical for long-term success. States continue to face numerous challenges in converting stakeholder support into financial commitment and real-time exchange of health information. We discuss the key issues states faced in attempting to realize broad-based HIE and offer insights that may assist other states.

Community-based telemonitoring for hypertension management: practical challenges and potential solutions.

Older adults residing in rural areas often lack convenient, patient-centered, community-based approaches to facilitate receipt of routine care to manage common chronic conditions. Without adequate access to appropriate disease management resources, the risk of seniors' experiencing acute events related to these common conditions increases substantially. Further, poorly managed chronic conditions are costly and place seniors at increased risk of institutionalization and permanent loss of independence. Novel, telehealth-based approaches to management of common chronic conditions like hypertension may not only improve the health of older adults, but may also lead to substantial cost savings associated with acute care episodes and institutionalization. The aim of this report is to summarize practical considerations related to operations and logistics of a unique community-based telemonitoring pilot study targeting rural seniors who utilize community-based senior centers. This article reviews the technological challenges encountered during the study and proposes solutions relevant to future research and implementation of telehealth in community-based, congregate settings.

Generalized and specific neurocognitive deficits in prodromal schizophrenia.

BACKGROUND: Neurocognitive deficits are considered to be central to the pathophysiology of schizophrenia, and the neurodevelopmental model suggests that such deficits precede full-blown psychosis. The present study examined performance on a broad neuropsychological battery of young subjects considered to be at clinical high risk for schizophrenia, who were subsequently followed to determine clinical outcome. METHODS: Subjects were 38 clinical high-risk patients (58% male patients; mean age = 16.5) and 39 sex- and age-matched healthy control subjects. At baseline, all high-risk patients had attenuated (subpsychotic) schizophrenialike positive symptoms. Clinical follow-up data of at least 6 months duration was available on 33 patients, of whom 12 developed nonaffective psychotic disorders. RESULTS: At baseline, clinical high-risk patients had significantly impaired global cognitive performance relative to control subjects and to estimates of their own prior intellectual functioning. Measures of verbal memory and executive functioning/working memory showed significantly greater impairments; visuospatial functioning was relatively spared. Prodromal patients who later developed psychosis had significantly lower verbal memory scores at baseline compared with patients who remained nonpsychotic. CONCLUSIONS: Verbal memory deficits may be an important risk marker for the development of schizophrenia-spectrum psychotic disorders, possibly indicating the presence of a prefrontal-hippocampal neurodevelopmental abnormality. Generalized neurocognitive impairment may be a nonspecific vulnerability marker.

Prospective study of adolescents with subsyndromal psychosis: characteristics and outcome.

OBJECTIVE: The aim of this study was to examine the characteristics and outcome of adolescents with psychotic disorder not otherwise specified (PsyNOS) and brief psychotic disorder (BrPsy), two neglected subsyndromal diagnostic entities. METHODS: As part of an ongoing, naturalistic study investigating adolescents considered to be prodromal for schizophrenia, 29 youngsters (mean age, 16.2 +/- 2.7 years) with PsyNOS or BrPsy were identified as theoretically at highest risk for schizophrenia and followed for over 6 (mean, 22.8 +/- 19.4) months. RESULTS: Contrary to our expectations, only 7 of the 26 individuals (27.0%) with follow-up data developed schizophrenia or schizoaffective disorder, and only 2 subjects (7.7%) retained their diagnosis of BrPsy/PsyNOS. The most frequent other diagnoses at follow-up were mood disorders (34.6%), personality disorders (11.5%), and obsessive-compulsive disorder (7.7%). Regarding severity of outcome, 38.5% of the patients progressed to a syndromal psychotic disorder, 23.1% continued to have attenuated positive symptoms, and 38.4% improved to having attenuated negative symptoms only, or no positive or negative symptoms. BrPsy was associated with lower maximum levels of negative symptoms (p = 0.02) and higher likelihood of symptom remission (p = 0.02). CONCLUSIONS: This study indicates that psychotic symptoms not fulfilling criteria for schizophrenia or a psychotic mood disorder are unreliable predictors of a syndromal psychotic disorder outcome at 2 years. Long-term studies of PsyNOS and BrPsy are needed to clarify where these disorders fall in the developmental course of schizophrenia.