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J Multidiscip Healthc ; 15: 247-258, 2022.
Article in English | MEDLINE | ID: covidwho-1690577

ABSTRACT

OBJECTIVE: Several comments and recommendations called to embed better the patients' and public voice in healthcare policymaking. Still, no studies captured patients' bottom-up perspectives regarding healthcare at the time of COVID-19 at a micro-level in a range of different countries. We, therefore, explored the perspectives of patient representatives in all six World Health Organisation (WHO) regions and extracted suggestions for care redesign after the pandemic. METHODS: We conducted semi-structured interviews with patient representatives until saturation. Thematic analysis followed a modified form of meaning condensation. We established rigour by transcript checking, inter-coder agreement, quote variation and standardised reporting. RESULTS: Disadvantaged people experienced an unprecedented inequity in healthcare from limited access to physical violence. The narratives revealed the extent of this inequity, but also opportunities for health workers to act and improve. Stigmatisation from COVID-19 differed between cultures and countries and ranged from none to feeling "ashamed" and "totally bashed". While experienced as indispensable in the future, patients refused telehealth when they were given "bad news", such as having an eye removed because of melanoma, and in end-of-life care. Patient representatives redefined their role and became indispensable influencers throughout the pandemic and beyond. CONCLUSION: We reached out to patient representatives with diverse perspectives, including those who represent minorities and marginalised patient populations. Since preferences and personal meanings drive behaviour and could be foundations for targeted interventions, they must be considered in all groups of people to increase society's resilience as a whole. Future healthcare should tackle inequity, address stigmatisation and consider patients' narratives to optimize telemedicine.

2.
J Clin Epidemiol ; 135: 125-135, 2021 07.
Article in English | MEDLINE | ID: covidwho-1118538

ABSTRACT

OBJECTIVES: The number of published clinical practice guidelines related to COVID-19 has rapidly increased. This study explored if basic methodological standards of guideline development have been met in the published clinical practice guidelines related to COVID-19. STUDY DESIGN AND SETTING: Rapid systematic review from February 1 until April 27, 2020 using MEDLINE [PubMed], CINAHL [Ebsco], Trip and manual search, including all types of healthcare workers providing any kind of healthcare to any patient population in any setting. RESULTS: There were 1342 titles screened and 188 guidelines included. The highest average AGREE II domain score was 89% for scope and purpose, the lowest for rigor of development (25%). Only eight guidelines (4%) were based on a systematic literature search and a structured consensus process by representative experts (classified as the highest methodological quality). The majority (156; 83%) was solely built on an informal expert consensus. A process for regular updates was described in 27 guidelines (14%). Patients were included in the development of only one guideline. CONCLUSION: Despite clear scope, most publications fell short of basic methodological standards of guideline development. Clinicians should use guidelines that include up-to-date information, were informed by stakeholder involvement, and employed rigorous methodologies.


Subject(s)
COVID-19/therapy , Practice Guidelines as Topic/standards , Humans , SARS-CoV-2
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