Consumer Informatics and COVID-19 Pandemics: Challenges and Opportunities for Research

Summary Objective: To summarise the state of the art during the year 2020 in consumer health informatics and education, with a special emphasis on “Managing Pandemics with Health Informatics - Successes and Challenges”. Methods: We conducted a systematic search of articles published in PubMed using a predefined set of queries, which identified 147 potential articles for review. These articles were screened according to topic relevance and 15 were selected for consideration of best paper candidates, which were then presented to a panel of international experts for full paper review and scoring. The top five papers were discussed in a consensus meeting. Three papers received the highest score from the expert panel, and these papers were selected to be representative papers on consumer informatics for managing pandemics in the year 2020. Results: Bibliometrics analysis conducted on words found in abstracts of the candidate papers revealed 4 clusters of articles, where the clustering outcomes explained 77.04% of the dispersion. The first cluster composed of articles related to the use of mobile apps for video consultation and telehealth during the pandemic. The second revealed studies reporting the lived experience of healthcare workers and patients during COVID-19. The third focused on ways people used the internet to seek for health information during the pandemic and the dissemination of fake news. The last cluster composed of articles reporting the use of social listening methods (e.g., via tweet hashtags) to explore the spread of the virus around the world. Conclusions: The pandemic outbreak of the novel coronavirus disease (COVID-19) constitutes a grave risk to the global community and sparks a significant increase in public interest and media coverage, especially on social media. Consumers are facing a new set of challenges that were not considered before COVID-19, often finding themselves in a world that is constantly changing—blended with facts and fake information—and unable to decide what to do next. Despite most people understanding the good will behind public health policies, one must not forget it is individuals we are supporting and that their personal circumstances may affect how they perceive and comply with these policies. Consumers more than ever need help to make sense of the uncertainty and their situation and we need to help them navigate the best option in a world that is constantly evolving.

The Impact of Previsit Contextual Data Collection on Patient-Provider Communication and Patient Activation: Study Protocol for a Randomized Controlled Trial

Background Patient-centered care is respectful of and responsive to individual patient preferences, needs, and values. To provide patient-centered care, clinicians need to know and incorporate patients’ context into their communication and care with patients. Patient contextual data (PCD) encompass social determinants of health and patients’ needs, values, goals, and preferences relevant to their care. PCD can be challenging to collect as a routine component of the time-limited primary care visit. Objective This study aims to determine if patient-provider communication and patient activation are different for patient users and patient nonusers of an electronic health record (EHR)–integrated PCD tool and assess if the impact of using PCD on patient-provider communication and patient activation differs for Black and White patients. Methods We describe a randomized controlled trial of a prospective cohort of non-Hispanic White and Black patients who receive primary care services at a midwestern academic health care system in the United States. We will evaluate whether providing PCD through a consumer informatics tool enhances patient-provider communication, as measured by the Communication Assessment Tool, and we will evaluate patient activation, as measured by the Patient Activation Measure for PCD tool users and nonusers. Furthermore, owing to racial disparities in care and communication, we seek to determine if the adoption and use of the tool might narrow the differences between patient groups. Results The trial was funded in November 2017 and received local ethics review approval in February 2019. The study began recruitment in April 2019 and enrollment concluded in October 2019 with 301 participants. The analysis was completed in May 2020, and trial results are expected to be published in winter 2020. Conclusions Recently, there has been increased attention to the role of health information technology tools to enable patients to collaborate with providers through the sharing of PCD. The adoption of such tools may overcome the barriers of current EHRs by directly engaging patients to submit their contextual data. Effectively, these tools would support the EHR in providing a more holistic understanding of the patient. Research further supports that individuals who have robust digital engagement using consumer informatics tools have higher participation in treatment follow-up and self-care across populations. Therefore, it is critical to investigate interventions that elicit and share patients’ social risks and care preferences with the health care team as a mechanism to improve individualized care and reduce the gap in health outcomes. Trial Registration ClinicalTrials.gov NCT03766841; https://clinicaltrials.gov/ct2/show/NCT03766841 International Registered Report Identifier (IRRID) RR1-10.2196/20309

The Impact of Previsit Contextual Data Collection on Patient-Provider Communication and Patient Activation: Study Protocol for a Randomized Controlled Trial (Preprint)

BACKGROUND Patient-centered care is respectful of and responsive to individual patient preferences, needs, and values. To provide patient-centered care, clinicians need to know and incorporate patients’ context into their communication and care with patients. Patient contextual data (PCD) encompass social determinants of health and patients’ needs, values, goals, and preferences relevant to their care. PCD can be challenging to collect as a routine component of the time-limited primary care visit. OBJECTIVE This study aims to determine if patient-provider communication and patient activation are different for patient users and patient nonusers of an electronic health record (EHR)–integrated PCD tool and assess if the impact of using PCD on patient-provider communication and patient activation differs for Black and White patients. METHODS We describe a randomized controlled trial of a prospective cohort of non-Hispanic White and Black patients who receive primary care services at a midwestern academic health care system in the United States. We will evaluate whether providing PCD through a consumer informatics tool enhances patient-provider communication, as measured by the Communication Assessment Tool, and we will evaluate patient activation, as measured by the Patient Activation Measure for PCD tool users and nonusers. Furthermore, owing to racial disparities in care and communication, we seek to determine if the adoption and use of the tool might narrow the differences between patient groups. RESULTS The trial was funded in November 2017 and received local ethics review approval in February 2019. The study began recruitment in April 2019 and enrollment concluded in October 2019 with 301 participants. The analysis was completed in May 2020, and trial results are expected to be published in winter 2020. CONCLUSIONS Recently, there has been increased attention to the role of health information technology tools to enable patients to collaborate with providers through the sharing of PCD. The adoption of such tools may overcome the barriers of current EHRs by directly engaging patients to submit their contextual data. Effectively, these tools would support the EHR in providing a more holistic understanding of the patient. Research further supports that individuals who have robust digital engagement using consumer informatics tools have higher participation in treatment follow-up and self-care across populations. Therefore, it is critical to investigate interventions that elicit and share patients’ social risks and care preferences with the health care team as a mechanism to improve individualized care and reduce the gap in health outcomes. CLINICALTRIAL ClinicalTrials.gov NCT03766841; https://clinicaltrials.gov/ct2/show/NCT03766841 INTERNATIONAL REGISTERED REPORT RR1-10.2196/20309