A data flow process for confidential data and its application in a health research project.

BACKGROUND: The use of linked healthcare data in research has the potential to make major contributions to knowledge generation and service improvement. However, using healthcare data for secondary purposes raises legal and ethical concerns relating to confidentiality, privacy and data protection rights. Using a linkage and anonymisation approach that processes data lawfully and in line with ethical best practice to create an anonymous (non-personal) dataset can address these concerns, yet there is no set approach for defining all of the steps involved in such data flow end-to-end. We aimed to define such an approach with clear steps for dataset creation, and to describe its utilisation in a case study linking healthcare data. METHODS: We developed a data flow protocol that generates pseudonymous datasets that can be reversibly linked, or irreversibly linked to form an anonymous research dataset. It was designed and implemented by the Comprehensive Patient Records (CPR) study in Leeds, UK. RESULTS: We defined a clear approach that received ethico-legal approval for use in creating an anonymous research dataset. Our approach used individual-level linkage through a mechanism that is not computer-intensive and was rendered irreversible to both data providers and processors. We successfully applied it in the CPR study to hospital and general practice and community electronic health record data from two providers, along with patient reported outcomes, for 365,193 patients. The resultant anonymous research dataset is available via DATA-CAN, the Health Data Research Hub for Cancer in the UK. CONCLUSIONS: Through ethical, legal and academic review, we believe that we contribute a defined approach that represents a framework that exceeds current minimum standards for effective pseudonymisation and anonymisation. This paper describes our methods and provides supporting information to facilitate the use of this approach in research.

Minnesota Electronic Health Record Consortium COVID-19 Project: Informing Pandemic Response Through Statewide Collaboration Using Observational Data.

OBJECTIVE: Robust disease and syndromic surveillance tools are underdeveloped in the United States, as evidenced by limitations and heterogeneity in sociodemographic data collection throughout the COVID-19 pandemic. To monitor the COVID-19 pandemic in Minnesota, we developed a federated data network in March 2020 using electronic health record (EHR) data from 8 multispecialty health systems. MATERIALS AND METHODS: In this serial cross-sectional study, we examined patients of all ages who received a COVID-19 polymerase chain reaction test, had symptoms of a viral illness, or received an influenza test from January 3, 2016, through November 7, 2020. We evaluated COVID-19 testing rates among patients with symptoms of viral illness and percentage positivity among all patients tested, in aggregate and by zip code. We stratified results by patient and area-level characteristics. RESULTS: Cumulative COVID-19 positivity rates were similar for people aged 12-64 years (range, 15.1%-17.6%) but lower for adults aged ≥65 years (range, 9.3%-10.7%). We found notable racial and ethnic disparities in positivity rates early in the pandemic, whereas COVID-19 positivity was similarly elevated across most racial and ethnic groups by the end of 2020. Positivity rates remained substantially higher among Hispanic patients compared with other racial and ethnic groups throughout the study period. We found similar trends across area-level income and rurality, with disparities early in the pandemic converging over time. PRACTICE IMPLICATIONS: We rapidly developed a distributed data network across Minnesota to monitor the COVID-19 pandemic. Our findings highlight the utility of using EHR data to monitor the current pandemic as well as future public health priorities. Building partnerships with public health agencies can help ensure data streams are flexible and tailored to meet the changing needs of decision makers.

A Novel Patient Values Tab for the Electronic Health Record: A User-Centered Design Approach.

BACKGROUND: The COVID-19 pandemic has shined a harsh light on a critical deficiency in our health care system: our inability to access important information about patients' values, goals, and preferences in the electronic health record (EHR). At Memorial Sloan Kettering Cancer Center (MSK), we have integrated and systematized health-related values discussions led by oncology nurses for newly diagnosed cancer patients as part of routine comprehensive cancer care. Such conversations include not only the patient's wishes for care at the end of life but also more holistic personal values, including sources of strength, concerns, hopes, and their definition of an acceptable quality of life. In addition, health care providers use a structured template to document their discussions of patient goals of care. OBJECTIVE: To provide ready access to key information about the patient as a person with individual values, goals, and preferences, we undertook the creation of the Patient Values Tab in our center's EHR to display this information in a single, central location. Here, we describe the interprofessional, interdisciplinary, iterative process and user-centered design methodology that we applied to build this novel functionality as well as our initial implementation experience and plans for evaluation. METHODS: We first convened a working group of experts from multiple departments, including medical oncology, health informatics, information systems, nursing informatics, nursing education, and supportive care, and a user experience designer. We conducted in-depth, semistructured, audiorecorded interviews of over 100 key stakeholders. The working group sought consensus on the tab's main content, homing in on high-priority areas identified by the stakeholders. The core content was mapped to various EHR data sources. We established a set of high-level design principles to guide our process. Our user experience designer then created wireframes of the tab design. The designer conducted usability testing with physicians, nurses, and other health professionals. Data validation testing was conducted. RESULTS: We have already deployed the Patient Values Tab to a pilot sample of users in the MSK Gastrointestinal Medical Oncology Service, including physicians, advanced practice providers, nurses, and administrative staff. We have early evidence of the positive impact of this EHR innovation. Audit logs show increasing use. Many of the initial user comments have been enthusiastically positive, while others have provided constructive suggestions for additional tab refinements with respect to format and content. CONCLUSIONS: It is our challenge and obligation to enrich the EHR with information about the patient as a person. Realization of this capability is a pressing public health need requiring the collaboration of technological experts with a broad range of clinical leaders, users, patients, and families to achieve solutions that are both principled and practical. Our new Patient Values Tab represents a step forward in this important direction.

COVID-19 Pandemic Impact on the National Health Care Surveys.

While underscoring the need for timely, nationally representative data in ambulatory, hospital, and long-term-care settings, the COVID-19 pandemic posed many challenges to traditional methods and mechanisms of data collection. To continue generating data from health care and long-term-care providers and establishments in the midst of the COVID-19 pandemic, the National Center for Health Statistics had to modify survey operations for several of its provider-based National Health Care Surveys, including quickly adding survey questions that captured the experiences of providing care during the pandemic. With the aim of providing information that may be useful to other health care data collection systems, this article presents some key challenges that affected data collection activities for these national provider surveys, as well as the measures taken to minimize the disruption in data collection and to optimize the likelihood of disseminating quality data in a timely manner. (Am J Public Health. 2021;111(12):2141-2148. https://doi.org/10.2105/AJPH.2021.306514).

The mechanics of setting up a COVID-19 response: Experiences of the COVID-19 epidemic from Groote Schuur Hospital, Cape Town, South Africa.

The SARS-CoV-2 pandemic has challenged the provision of healthcare in ways that are unprecedented in our lifetime. Planning for the sheer numbers expected during the surge has required public hospitals to de-escalate all non-essential clinical services to focus on COVID-19. Western Cape Province was the initial epicentre of the COVID-19 epidemic in South Africa (SA), and the Cape Town metro was its hardest-hit geographical region. We describe how we constructed our COVID-19 hospital-wide clinical service at Groote Schuur Hospital, the University of Cape Town's tertiary-level teaching hospital. By describing the barriers and enablers, we hope to provide guidance rather than a blueprint for hospitals elsewhere in SA and in low-resource countries that face similar challenges now or during subsequent waves.

The value of federated learning during and post-COVID-19.

Federated learning (FL) as a distributed machine learning (ML) technique has lately attracted increasing attention of healthcare stakeholders as FL is perceived as a promising decentralized approach to address data privacy and security concerns. The FL approach stores and maintains the privacy-sensitive data locally while allows multiple sites to train ML models collaboratively. We aim to describe the most recent real-world cases using the FL in both COVID-19 and non-COVID-19 scenarios and also highlight current limitations and practical challenges of FL.

Affordable digital innovation to reduce SARS-CoV-2 transmission among healthcare workers.

In the South African public healthcare sector, patient medical records are still written on paper and stored in filing rooms. There has been an attempt to move towards a paperless electronic system in many public healthcare facilities, but owing to lack of funding, this has been a challenge to achieve. During the current COVID-19 pandemic, the virus could be transmitted through the physical manipulation of patient records by various categories of staff who handle the records with or without gloves for protection. We discuss a digital option that has been partially used at Tygerberg Hospital (TBH), Cape Town, to avoid SARS-CoV-2 patient hard-copy record manipulation. It includes assignment of a QR code to every patient admitted as a person under investigation or confirmed COVID-19 case. The QR code is synced to one of the many free online medical notes smartphone applications (apps), which are password-protected with patient information privacy regulations (Trello is used at TBH), for daily medical notes review and editing. Upon discharge, all notes made during the patient's hospital stay, together with the discharge summary, are printed to generate a hard copy of notes for filing to avoid violation of the current national and provincial patient records policy. Doing this means that a patient will have a virtual online file through the designated app until discharge, when a physical file will be made for storage and safekeeping. It will keep physical manipulation of patient records to the minimum, and potentially assist in reducing transmission of the SARS-CoV-2 virus among healthcare workers.

Telehealth Availability in US Hospitals in the Face of the COVID-19 Pandemic.

BACKGROUND: Telehealth is likely to play a crucial role in treating COVID-19 patients. However, not all US hospitals possess telehealth capabilities. This brief report was designed to explore US hospitals' readiness with respect to telehealth availability. We hope to gain deeper insight into the factors affecting possession of these valuable capabilities, and how this varies between rural and urban areas. METHODS: Based on 2017 data from the American Hospital Association survey, Area Health Resource Files and Medicare cost reports, we used logistic regression models to identify predictors of telehealth and eICU capabilities in US hospitals. RESULTS: We found that larger hospitals (OR(telehealth) = 1.013; P < .01) and system members (OR(telehealth) = 1.55; P < .01) (OR(eICU) = 1.65; P < .01) had higher odds of possessing telehealth and eICU capabilities. We also found evidence suggesting that telehealth and eICU capabilities are concentrated in particular regions; the West North Central region was the most likely to possess capabilities, given that these hospitals had higher odds of possessing telehealth (OR = 1.49; P < .10) and eICU capabilities (OR = 2.15; P < .05). Rural hospitals had higher odds of possessing telehealth capabilities as compared to their urban counterparts, although this relationship was marginally significant (OR = 1.34, P < .10). CONCLUSIONS: US hospitals vary in their preparation to use telehealth to aid in the COVID-19 battle, among other issues. Hospitals' odds of possessing the capability to provide such services vary largely by region; overall, rural hospitals have more widespread telehealth capabilities than urban hospitals. There is still great potential to expand these capabilities further, especially in areas that have been hard hit by COVID-19.

Tele-consultations and electronic medical records driven remote patient care: Responding to the COVID-19 lockdown in India.

Purpose: To describe the experience of tele-consultations addressed at the centre of excellence of a multi-tier ophthalmology hospital network in India during the ongoing novel coronavirus (COVID-19) lockdown. Methods: This cross-sectional hospital-based study included 7,008 tele-consultations presenting between March 23rd and April 19th 2020. A three-level protocol was implemented to triage the calls. The data of patient queries were collected using a Google Form/Sheets and the tele-calls were returned using the patient information retrieved from the electronic medical record system. Results: Overall, 7,008 tele-calls were addressed, of which 2,805 (40.02%) patients where a clinical-related query was answered were included for analysis. The most common queries were related to redness/pain/watering/blurring of vision (31.52%), closely followed by usage of medications (31.05%). The majority of the queries were directed to the department of cornea (34.15%), followed by retina (24.74%). Less than one-fifth of the patients were from the lower socio-economic class (16.08%) and one-fourth were new patients (23.96%). The most common advice given to the patient was related to management of medications (54.15%) followed by appointment related (17.79%). Emergency requests requiring further evaluation by an ophthalmologist accounted for a small percentage (16.36%) of patients. Conclusion: Tracking of tele-consultations and access to patient information from the electronic medical records enabled a timely response in an ongoing lockdown due to the COVID-19 pandemic. The current experience provided valuable insights to the possibility of managing patient follow-up visits remotely in the future.