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Aims: To bridge the gap between evidence synthesis research into the impact of the pandemic on people with diabetes (PWD) and the reality of lived experience, and give PWD space to share and reflect on their experiences. Method(s): Through a socially-distanced public engagement project, working with artists, clinicians, researchers, and PWD, we created a physical art installation and digital interactive exhibition to capture individual experiences of living through the pandemic with diabetes. PWD could submit art or written work in any form for inclusion. We evaluated public engagement by participant numbers and demographics, visitors to the digital exhibition, and written feedback. Viewers could complete an optional survey sharing thoughts about the project. Result(s): 26 people aged 16-74 years submitted to the project;58% had had type 1 diabetes, 27% had type 2 diabetes. 708 people viewed the digital exhibition (diabetescovid. art) in the first 2 months. Their responses to the exhibition included: brave, overwhelming, scary, resonating with personal experience, community giving voice, thought provoking, moving, emotional, motivating, insightful, interesting, fascinating;all respondents said they had learned from the exhibition. Summary: Our PPI representative summarised her experience of the project: "Health research is not just about the clinical, it is also about recognising, empathising with and learning from the experiences of people as demonstrated in this project. Patient involvement in research is about helping to bring about progress. It is about learning more about one's own health and well-being and also about giving something back. Above all, it is about hope.".
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INTRODUCTION: People with complex health and social needs often require care from different providers and services. Identifying their existing sources of support could assist with addressing potential gaps and opportunities for enhanced service delivery. Eco-mapping is an approach used to visually capture people's social relationships and their linkages to the larger social systems. As it is an emerging and promising approach in the health services field, a scoping review on eco-mapping is warranted. This scoping review aims to synthesise the empirical literature that has focused on the application of eco-mapping by describing characteristics, populations, methodological approaches and other features of eco-mapping in health services research. METHODS AND ANALYSIS: This scoping review will follow the Joanna Briggs Institute methodology. From the date of database construction to 16 January 2023, the following databases in English will be searched: Ovid Medline, Ovid Embase, CINAHL Ultimate (EBSCOhost), Emcare (Ovid), Cochrane Central Register of Controlled Trials (Ovid) and Cochrane Database of Systematic Reviews (Ovid) Study/Source of Evidence selection. The inclusion criteria consist of empirical literature that uses eco-mapping or a related tool in the context of health services research. Two researchers will independently screen references against inclusion and exclusion criteria using Covidence software. Once screened, the data will be extracted and organised according to the following research questions: (1) What research questions and phenomena of interest do researchers address when using eco-mapping? (2) What are the characteristics of studies that use eco-mapping in health services research? (3) What are the methodological considerations for eco-mapping in health services research? ETHICS AND DISSEMINATION: This scoping review does not require ethical approval. The findings will be disseminated through publications, conference presentations and stakeholder meetings. TRIAL REGISTRATION NUMBER: https://doi.org/10.17605/OSF.IO/GAWYN.
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Academies and Institutes , Health Services Research , Humans , Systematic Reviews as Topic , Databases, Factual , Interpersonal Relations , Research Design , Review Literature as TopicABSTRACT
Background/Aims The COVID-19 pandemic has placed unprecedented pressures on NHS departments, with demand rapidly outstripping capacity. The British Society for Rheumatology 'Rheumatology Workforce: a crisis in numbers (2021)' highlighted the need to provide innovative ways of delivering rheumatology specialist care. At University College London Hospitals (UCLH) we created a rheumatology multidisciplinary team (MDT) clinic to meet rising demands on our service. The aims of the Rheumatology MDT clinic were to: reduce new appointment/follow-up waiting times, increase clinic capacity, incorporate musculoskeletal (MSK) point of care ultrasound, reduce number of hospital visits and add value to each clinic encounter. Methods We ran a 6-month pilot, supported by our outpatient transformation team, incorporating a Rheumatology Advanced Practice Physiotherapist (APP), Clinical Nurse Specialist (CNS) and MSK ultrasound within a Consultant clinic. The success of the pilot helped secure funding for a further 12 months. Over 18 months we have implemented: APP/Consultant enhanced triage - up to 40% of referrals were appropriate for APP assessment, including regional MSK problems and back pain. This increased capacity for consultant-led appointments. Standardisation of time-lapse between CNS and consultant follow-up appointments to ensure appropriate spacing between patient encounters. Facilitated overbooking of urgent cases afforded by additional capacity provided by the APP. MSK ultrasound embedded in the clinic template. 'Zoom' patient education webinars facilitated by MDT members and wider disciplines e.g. dietetics, to empower self-management and reduce the administrative burden of patient emails/phone calls occurring outside the clinic. Patient participation sessions and feedback to help shape the service. Results During the 6-month pilot we reduced our waiting time for follow-up appointments from 9 months to 2. We now have capacity to book 1-2 urgent cases each week. Pre-MDT the average wait from consultant referral to physiotherapist appointment was 55 days. The MDT allows for same day assessment (reducing 2-3 patient journeys a clinic) and where suitable, facilitates discharge or onwards referral to the appropriate service. A dedicated MDT CNS has shortened treatment times, reduced email traffic between CNS and consultant and allows for same day, joint decision-making resulting in fewer appointments. Zoom webinar feedback has been positive. Patients value the broad expertise of allied health professionals which supports self-management. Embedding ultrasound allows for same day diagnostics, decreased referrals to radiology and reduced hospital visits. Conclusion Our MDT model has reduced waiting lists, decreased treatment delays and cut hospital attendances. Point of care ultrasound allows for same day decision making and abolishes the cost and diagnostic delay associated with referrals to radiology or outsourced providers. Shared decision-making adds value to outpatient attendances, which is reflected in patients' positive feedback. The MDT model maximises the existing workforce skill set by enhancing the APP and CNS role, allowing patients immediate access to their expertise.
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Introduction: In 2022, the Global Lung Cancer Coalition (GLCC), a partnership of 42 patient organisations across 30 countries, ran its third annual global patient experience survey on the continued impact of COVID-19 on people living with lung cancer. Method(s): A steering group of patients, advocates, and clinicians developed the survey, asking questions around screening, patients' involvement in decision-making, and preferences in speaking to their treatment team. 555 patients from 21 countries responded, including 83 from the UK and Ireland. [Figure presented] Results: The results show that all responding patients in Ireland and 9 in 10 in the UK would attend a screening appointment if it was available and they were invited. Only a small proportion said they would not attend, and a minority were unsure. When asked if they have been involved in decisions about their treatment and care, a large proportion of patients in both countries stated they have not felt fully involved. The majority of patients in the UK and Ireland prefer speaking to their treatment team in person in a range of situations. However, if patients are worried about something, they would be willing to have a telephone conversation with their treatment team. Conclusion(s): The findings on screening are encouraging given the National Screening Committee's recent recommendation to implement a targeted screening programme in the UK. In Ireland, advocacy organisations continue to lobby the Government for a national programme, and it is positive to see high levels of patient support. Treatment teams should be asking and supporting patients to be as involved in decisions around their treatment and care as they wish to be. Finally, it is clear that patients prefer to discuss their treatment and care face-to-face. Treatment teams should seek to understand patients' preferences, and health systems should put in place relevant provisions to offer virtual appointments. Disclosure: No significant relationships.Copyright © 2023 Elsevier B.V.
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Introduction: Somatic cough syndrome (formerly known as Psychogenic Cough) is an uncommon and sometimes underestimated cause of persistent cough that is generally found after a series of rigorous testing and therapies. There is a peak incidence between 8 and 14 years;both sexes are affected similarly. Case presentation: The current article describes three cases of somatic cough disorder observed at our institution during the COVID-19 pandemic. The patients were diagnosed after 2-3 months and were successfully managed with suggestive and behavioral therapy. Conclusion(s): Lack of knowledge regarding somatic cough syndrome exists among frontline health care personnel. The relevance of reporting such cases emphasizes the need for health care professionals to be aware of the need to avoid unneeded medical management. Whether or not COVID-19 is linked to an increased incidence of somatic cough syndrome is yet to be established. Still, multidisciplinary collaboration, patient participation, and public education are essential, along with a clear case definition or working diagnosis.Copyright © 2023, Bahrain Medical Bulletin. All rights reserved.
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BACKGROUND: Virtual data collection methods and consent procedures adopted in response to the COVID-19 pandemic enabled continued research activities, but also introduced concerns about equity, inclusivity, representation, and privacy. Recent studies have explored these issues from institutional and researcher perspectives, but there is a need to explore patient perspectives and preferences. This study aims to explore COVID-19 patients' perspectives about research recruitment and consent for research studies about COVID-19. METHODS: We conducted an exploratory qualitative focus group and interview study among British Columbian adults who self-identified as having had COVID-19. We recruited participants through personal contacts, social media, and REACH BC, an online platform that connects researchers and patients in British Columbia. We analyzed transcripts inductively and developed thematic summaries of each coding element. RESULTS: Of the 22 individuals recruited, 16 attended a focus group or interview. We found that autonomy and the feasibility of participation, attitudes toward research about COVID-19, and privacy concerns are key factors that influence participants' willingness to participate in research. We also found that participants preferred remote and virtual approaches for contact, consent, and delivery of research on COVID-19. CONCLUSIONS: Individuals who had COVID-19 are motivated to participate in research studies and value autonomy in their decision to participate, but researchers must be sensitive and considerate toward patient preferences and concerns, particularly as researchers adopt virtual recruitment and data collection methods. Such awareness may increase research participation and engagement.
Due to the COVID-19 pandemic, many research groups started conducting research activities virtually. In this study, we invited individuals who had COVID-19 to share their views about how researchers recruit patients and get their consent to participate in studies about COVID-19. Through interviews and focus groups, we found that British Columbians who had COVID-19 are motivated to participate in COVID-related studies, as long as researchers maintain usual precautions around data privacy and accommodate preferences for participation. Future studies may use these patient perspectives to make informed decisions that will increase and support patient recruitment, consent and retention in research studies.
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COVID-19 , Pandemics , Adult , Humans , Qualitative Research , Focus Groups , Informed ConsentABSTRACT
BACKGROUND: Nurses are the first point of contact for patients and are responsible for monitoring and reporting signs of infection. The COVID-19 pandemic cemented nurses' leadership role in infection prevention. Despite this, nurses' contribution to antimicrobial stewardship initiatives remains under-recognized. AIM: To determine how paediatric nurses understood their role and contribution to antimicrobial stewardship and infection prevention and control practices in three different acute paediatric wards. METHODS: Forty-three nurses were recruited from an adolescent ward, an oncology ward, and a surgical ward in a metropolitan tertiary children's hospital for a qualitative exploratory descriptive study. FINDINGS: Thematic and content analysis derived three themes from the data: understanding of preventable infections; embracing evidence-based guidelines to protect the patient; and roles in preventing and controlling infections and antimicrobial stewardship. Associated subthemes were: desensitized to COVID-19; understanding infection prevention and control precautions; correct use of hospital policy and guidelines; restrictions associated with the use of electronic medical records; understanding of sepsis management and the importance of timely microbiological testing; ambivalence on antimicrobial stewardship roles; and high priority placed on consumer education. CONCLUSION: Nurses' understanding of their role focused on practices such as performing hand hygiene, standard precautions, and reporting the use of high-risk antimicrobials. A lack of understanding of paediatric COVID-19 transmission and presentations was also reported. Education on best practice in infection prevention and AMS was recognized as crucial for both nurses and parents.
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Antimicrobial Stewardship , COVID-19 , Humans , Child , Adolescent , Clinical Competence , Pandemics/prevention & control , COVID-19/prevention & control , Qualitative ResearchABSTRACT
BACKGROUND: Historically, people aged 65 years or older have been slower to adopt new technol-ogy. However, technology use in this demographic continues to increase. OBJECTIVES: This study aimed to understand how patients with cancer who are aged 65 years or older engage with technology and whether patient behavior related to technology use has changed because of the COVID-19 pandemic. In addition, this study evaluated whether respondents' understand-ing of technology was associated with increased likelihood of adoption and perceived utility of the ONS On-CallTM cancer treatment symptom assessment tool. METHODS: A U.S. population-based anonymous online survey was conducted between May 17 and May 31, 2021, with 103 patients with cancer aged at least 65 years. FINDINGS:The majority of respondents used tech-nology regularly as part of their daily lives. Activities included shopping online, reading the news, or engaging with a healthcare platform. As a result of the COVID-19 pandemic, most respondents reported an increased use of digital activities, particularly the use of healthcare technology. Respondents reported they would be likely to use ONS On-Call, particularly if it is recommended by a healthcare provider.
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Dermatology has long been recognized as under-represented in UK's undergraduate curricula. With a diagnostic and educational toolkit that is heavily centred around face-to-face clinical examination, dermatology education has been disproportionately affected by the COVID-19 pandemic. Innovative approaches to distance teaching and learning within dermatology are essential, but historically have been unidirectional with a lack of community and patient-centred resources readily available. Online channel-based messaging apps such as Slack offer an opportunity to engage students in remote, multimodal collaborative learning by reproducing a classroom environment in the virtual space, while simultaneously maintaining a strong focus on patient care. The aim of this study was to determine the feasibility, acceptability and proof of concept for an online Slack community as an undergraduate dermatology learning platform. Undergraduate medical students participated in an online classroom for 6 weeks with a structured teaching programme encompassing online casebased discussions, seminars and journal clubs. The platform was facilitated by junior doctors (n = 10) and featured patient educators (n = 6). Students, faculty and patient educators completed a postcourse evaluation. In addition, students completed a pre-and postintervention dermatology quiz to determine knowledge acquisition. Mixed-methods analyses were applied including quantitative analyses to explore data trends and qualitative phenomenographic analyses to assimilate key underlying themes. Students (n = 65) were enrolled to join the platform for a 6-week period. The evaluation was completed by students (n = 52) from UK universities (n = 27). The majority of students (n = 27) interacted with the platform as passive observers (<= 5 active interactions). A small group of 'super users' (n = 4) actively engaged with the platform over 100 times during the study period. Ninety-six per cent of participants and 100% of faculty agreed that the overall quality of the course was excellent. No statistically significant difference in the pre-and postcourse dermatology quiz scores was noted, possibly owing to suboptimal levels of active engagement with the platform from many users. Barriers to engagement cited by the students included high university workload and the lack of a timetable for live sessions. A community-based online classroom can act as an enjoyable, acceptable and collaborative means of supplementing traditional educational methodologies for teaching dermatology to undergraduate medical students. Its ease of use and supportive nature can facilitate patient involvement, as well as other innovative approaches to teaching and learning dermatology, such as interuniversity collaboration and gamification of learning. Such advances may provide vital safeguards against the reduction in face-to-face learning that has accompanied the pandemic.
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Background: Intravenous (IV) infliximab (IFX) monotherapy is associated with significant loss of response. Therapeutic drug monitoring shows an association with low serum trough drug levels and development of anti-IFX antibodies. Combination therapy with immunomodulators is not always possible, and IFX dose escalation leads to higher drug costs and time pressure on infusion units. Both approaches have raised heightened patient safety concerns due to the Covid-19 pandemic. Subcutaneous (SC) IFX pharmacokinetics lead to improved drug trough levels, which could lead to better clinical outcomes. Method(s): The NHS Greater Glasgow and Clyde biologics database was used to identify selected patients currently treated with IV IFX for IBD for suitability for SC switch. Patients were contacted to allow informed choice to opt in or out of switch. Baseline clinical data was collected, and patients were reviewed at week 8 and week 24 for assessment of clinical disease activity scores, IFX trough levels/anti-drug antibody levels, and faecal calprotectin. Patient experience outcomes were assessed using a quality of life questionnaire (CUCQ-8). Result(s): 31 patients consented to switch;F:M = 17:14. The majority of patients (16) had Crohn's disease, with 13 with UC and 2 IBDU. Mean duration of disease was 9.1 years and duration of prior IV therapy was 3.3 years. 28 patients were reviewed at week 8 and 24 at week 24. At week 24, 71% of patients were in clinical remission (Harvey-Bradshaw index score <5 or partial Mayo score <2), 96% had CRP <5 mg/Land 87% had FCP <250mug/g. 21% of patients had subtherapeutic IFX trough levels at baseline, all had increased by week 8 and there were no subtherapeutic levels measured by week 24. One patient had detectable antibodies at week 24, compared with 9 patients at baseline. Three patients required oral steroid therapy during the 24-week follow up period. There were no hospital admissions, significant infections or adverse reactions within the cohort. 15 patients submitted CUCQ-8 scores, of these 7 patients' scores had worsened at week 8 but by week 24 13/15 were stable or improved compared to baseline. Conclusion(s): Switching from IV to SC infliximab is welcomed by most patients. The efficacy, tolerability, increased drug level and safety which has previously been demonstrated is reproduced in our cohort. This study is the first to explore patient experience outcomes. The finding of initial worsening of the CUCQ-8 score, but overall improvement by week 24 opens further opportunity for engaging patient involvement in switch programmes.
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Patient and public involvement (PPI) in clinical research strengthens the quality and relevance of research, and has been crucial to ensure that researchers continue to investigate relevant and important topics during the global Covid-19 pandemic. The MICE (Mental Health Intervention for Children with Epilepsy) randomised controlled trial relies upon PPI to steer the direction and delivery of the trial, and the PPI Research Advisory Group (RAG) adapted to remote online meetings during the pandemic. This article first describes how the PPI RAG supported the research trial during the course of the pandemic, particularly with key trial stages of recruitment, retention and follow-up. It considers how the PPI tasks were adapted to ensure that they remained meaningful throughout this period, particularly for children and young people. Second, the article explores the acceptability of PPI in research using teleconferencing methods, via a co-produced survey of the PPI group members. Survey results indicated that, while participants valued face-to-face meetings, having remote PPI meetings was preferable to having nothing. There was some suggestion that teleconferencing platforms make it challenging for reserved members of the group, and for children, to contribute. Our findings emphasise the importance of continuing PPI even when circumstances are sub-optimal. We hope that our findings will contribute to the wider conversation about what makes PPI effective, particularly in a digital world. [ FROM AUTHOR] Copyright of Research for All is the property of UCL Press and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full . (Copyright applies to all s.)
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Background During the COVID pandemic, we designed and implemented a program, called BQualD, to maintain high quality care for patients with HR+, HER2 negative MBC who were taking oral anti-cancer therapy and needed to shelter at home. This program augmented available clinical resources with (1) trained nurse coaches to manage side effects, improve adherence, monitor for cancer progression and screen for psychological distress via telehealth, and (2) a care coordinator to arrange blood testing at local labs to facilitate timely medication dose adjustments. BQual-D served patients from August 2020 through April 2021. Here, we describe survey results assessing patient (pt) satisfaction with BQual-D. Methods Pt's satisfaction surveys included questions rated on a Likert scale (1 "strongly disagree" to 5 "strongly agree") with questions regarding the following: satisfaction with the quality of the nurse coaching calls;perception that the nurse coach listened to what they were trying to convey;whether or not their needs were met by the nurse coaching calls;whether they felt that they received adequate explanation regarding the nurse coaching calls;whether they would recommend the nurse coaching calls to a friend;perception of whether or not the nurse coach was negative or critical towards them;whether or not they would do it over (i.e., if they would return to the nurse coaching calls);whether or not they felt that the nurse coach was friendly or warm toward them;they were able to more effectively deal with care and symptoms;they felt free to express themselves;they were able to focus on what was of real concern to them;the nurse seemed to understand what they were thinking and feeling. Patients were also asked how much the calls helped with their care and symptoms. Descriptive statistics are reported (i.e., frequencies and means). Results 84 pts were screened and contacted for the BQual-D program. Of the 64 pts who responded, 52 (81.3%) were interested and enrolled in BQual-D;12 (18.8%) declined. Among those who enrolled, 1 voluntarily withdrew, and 7 withdrew due to change in treatment. Participants had a mean age of 65 (range 36 - 88 yrs) and the following racial distribution -Caucasian/White (38, 73.1%), Black or African American (12, 23.1%), American Indian (1, 1.9%) and American Indian or Alaskan Native (1, 1.9%). Satisfaction surveys were received from 32 (50%) pts. Results of surveys regarding patient satisfaction with the nurse coach were generally positive. Pts agreed or strongly agreed that they were satisfied with the quality of the nurse coaching calls (94%), the nurse coach listened to what they were trying to convey (94%), their needs were met by the nurse coaching calls (91%), they understood the purpose of the call (90%), and they would recommend the nurse coaching calls to a friend (88%). The majority (74%) agreed or strongly agreed that they were able to more effectively deal with their care and symptoms after the nurse coach calls. When asked how much the calls helped their care and symptoms, 61% indicated that they made things a lot better, 19% indicated that they made things somewhat better, 16% indicated that they made no difference. One patient indicated that the calls made things somewhat worse. Conclusions During the COVID pandemic, when sheltering at home was encouraged, patient satisfaction with BQual-D, which provided additional health resources (nurse coaches, care coordinator) to support pts on oral therapy for HR+ MBC, was high. Resources needed to implement BQual-D should be explored as a way of providing additional support for pts to minimize the requirement for in-person visits. Funding(s): Supported by a grant from Pfizer.
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Older adults who transition from hospital to cardiac rehabilitation settings often are vulnerable and at risk of experiencing adverse health care outcomes. Given the complexities of transitional care, it is crucial to engage older adults in the clinical decision-making process and to promote their active participation in their medical care. Older adults have unique ways of understanding their participation in the transitional care process. Gaining an in-depth understanding of their specific needs during this process can help inform clinical practice and interventions aiming to improve care for older adults living with cardiovascular disease. Focused ethnography methodology was used to explore the perspectives of older adults and health care providers on patient participation in transitional care from hospital to cardiac rehabilitation. The study also sought to identify and to gain a better and more in-depth understanding of the challenges and opportunities that shape participation for older adults during transitional care from hospital to cardiac rehabilitation. Semi-structured interviews were conducted with 15 older adults and 6 healthcare providers from cardiac rehabilitation and cardiology units. Additional methods included document analysis and reflexive journaling. Thematic analysis revealed six themes and fifteen subthemes. Themes included: Follow-up from Healthcare Provides, Interactions with Healthcare Providers, Support from Family Members, Information about Medical Care and Rehabilitation, Decision-Making and Participation, and Healthcare Journey during COVID-19. Older adults reported gaps in follow-up and insufficient spaces or opportunities for participation in decision-making. Healthcare provider's support was reported as essential for a smooth transition, particularly nurses' support. The COVID-19 pandemic was mostly reported as a major barrier for participants, especially in terms of delayed medical procedures and difficult hospitalization experiences. Some participants, particularly those who seek social connection, viewed technology and virtual care negatively. However, virtual care delivery also was reported as a fruitful strategy to engage older adults in their care and to overcome transportation barriers. The results of this study can help inform the implementation of strategies that will engage older adults more actively in their care, as they transition from hospital to cardiac rehabilitation settings. (PsycInfo Database Record (c) 2023 APA, all rights reserved)
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BACKGROUND: COVID-19 is an ongoing global health crisis with prevention and treatment recommendations rapidly changing. Rapid response telephone triage and advice services are critical in providing timely care during pandemics. Understanding patient participation with triage recommendations and factors associated with patient participation can assist in developing sensitive and timely interventions for receiving the treatment to prevent adverse health effects of COVID-19. METHODS: This cohort study aimed to assess patient participation (percentage of patients who followed nursing triage suggestions from the COVID hotline) and identify factors associated with patient participation in four quarterly electronic health records from March 2020 to March 2021 (Phase 1: 14 March 2020-6 June 2020; Phase 2: 17 June 2020-16 September 2020; Phase 3: 17 September 2020-16 December 2020; Phase 4: 17 December 2020-16 March 2021). All callers who provided their symptoms (including asymptomatic with exposure to COVID) and received nursing triage were included in the study. Factors associated with patient participation were identified using multivariable logistic regression analyses, including demographic variables, comorbidity variables, health behaviors, and COVID-19-related symptoms. RESULTS: The aggregated data included 9849 encounters/calls from 9021 unique participants. Results indicated: (1) 72.5% of patient participation rate; (2) participants advised to seek emergency department care had the lowest patient participation rate (43.4%); (3) patient participation was associated with older age, a lower comorbidity index, a lack of unexplained muscle aches, and respiratory symptoms. The absence of respiratory symptoms was the only factor significantly associated with patient participation in all four phases (OR = 0.75, 0.60, 0.64, 0.52, respectively). Older age was associated with higher patient participation in three out of four phases (OR = 1.01-1.02), and a lower Charlson comorbidity index was associated with higher patient participation in phase 3 and phase 4 (OR = 0.83, 0.88). CONCLUSION: Public participation in nursing triage during the COVID pandemic requires attention. This study supports using a nurse-led telehealth intervention and reveals crucial factors associated with patient participation. It highlighted the importance of timely follow-up in high-risk groups and the benefit of a telehealth intervention led by nurses serving as healthcare navigators during the COVID-19 pandemic.
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COVID-19 , Nurses , Humans , Cohort Studies , COVID-19/epidemiology , Pandemics , Patient Participation , Triage/methodsABSTRACT
BACKGROUND: Health inequalities are rooted in historically unjust differences in economic opportunities, environment, access to health care services, and other social determinants. Owing to these health inequalities, the COVID-19 pandemic has disproportionately affected underserved populations, notably people of color, incarcerated and formerly incarcerated individuals, and those unable to physically distance themselves from others. However, people most strongly impacted by health disparities, and the pandemic, are not frequently engaged in research, either as researchers or as participants, resulting in slow progress toward improving health equity. Establishing ways to foster the engagement of historically excluded people is crucial to improving health equity through patient-centered health research. OBJECTIVE: This study aimed to assess the use of equity-centered design thinking (EDT) for engaging community members in research prioritization related to COVID-19. The co-design methods and subsequent production of a toolkit that can be used for engagement were assessed through process evaluation and qualitative methods. METHODS: Process evaluation and qualitative inquiry, using reflexive thematic analysis, were undertaken to examine the use of EDT. Patient community members and stakeholders remotely partnered with design and health researchers in a year-long digital process to cocreate capacity-building tools for setting agenda for research regarding the impact of COVID-19 on health outcomes. Through a series of 3 workshops, 5 community partners engaged in EDT activities to identify critical challenges for the health and well-being of their communities. The subsequent tools were tested with 10 health researchers who provided critical input over the course of 2 workshops. Interviews with co-designers, project materials, and feedback sessions were used in the process evaluation and finalization of an equity-centered toolkit for community engagement in research. Data from the co-design process, meetings, workshops, and interviews were analyzed using reflexive thematic analysis to identify salient themes. RESULTS: Process evaluation illustrated how the EDT co-design process offered an approach to engage patient partners and community stakeholders in health-related research around COVID-19. The participants expressed satisfaction with design thinking approaches, including creative activities and iterative co-design, as a means of working together. Thematic analysis identified 3 key themes: the value of authentic partnerships, building trust and empathy through design, and fostering candid dialogue around health and social issues impacting historically underrepresented and underinvested communities. CONCLUSIONS: The project addressed the need to test EDT strategies for fostering inclusive community engagement in health research agenda setting and provided an alternative to traditional top-down models. Despite the increasing use of human-centered design in health, few projects explicitly include equity in design thinking approaches. The use of methods and tools to intentionally engage underrepresented stakeholders in the process of research agenda setting and equitably sharing power between researchers and community members may improve health research, ultimately improving health equity.