Dataset Information

Talking to the people that really matter about their participation in pandemic clinical research: A qualitative study in four European countries.

ABSTRACT:

Background

Pandemics of new and emerging infectious diseases are unpredictable, recurrent events that rapidly threaten global health and security. We aimed to identify public views regarding provision of information and consent to participate in primary and critical care clinical research during a future influenza-like illness pandemic.

Methods

Descriptive-interpretive qualitative study, using focus groups (n = 10) and semi-structured interviews (n = 16), with 80 members of the public (>18 years) in Belgium, Spain, Poland and the UK. Local qualitative researchers followed a scenario-based topic guide to collect data. Data were transcribed verbatim, translated into English and subject to framework analysis.

Results

Public understandings of pandemics were shaped by personal factors (illness during the previous H1N1 pandemic, experience of life-threatening illness) and social factors (historical references, media, public health information). Informants appreciated safeguards provided by ethically robust research procedures, but current enrolment procedures were seen as a barrier. They proposed simplified enrolment processes for higher risk research and consent waiver for certain types of low-risk research. Decision making about research participation was influenced by contextual, research and personal factors. Informants generally either carefully weighed up various approaches to research participation or responded instinctively. They supported the principle of using routinely collected, anonymized clinical biological samples for research without explicit consent, but regarded this as less acceptable if researchers were motivated primarily by commercial gain.

Conclusions

This bottom-up approach to ascertaining public views on pandemic clinical research has identified support for more proportionate research protection procedures for publically funded, low-risk studies.

SUBMITTER: Gobat NH

PROVIDER: S-EPMC5750735 | biostudies-literature | 2018 Feb

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Talking to the people that really matter about their participation in pandemic clinical research: A qualitative study in four European countries.

Gobat Nina H NH Gal Micaela M Butler Christopher C CC Webb Steve A R SAR Francis Nicholas A NA Stanton Helen H Anthierens Sibyl S Bastiaens Hilde H Godycki-Ćwirko Maciek M Kowalczyk Anna A Pons-Vigués Mariona M Pujol-Ribera Enriqueta E Berenguera Anna A Watkins Angela A Sukumar Prasanth P Moore Ronald G RG Hood Kerenza K Nichol Alistair A

Health expectations : an international journal of public participation in health care and health policy 20170927 1

<h4>Background</h4>Pandemics of new and emerging infectious diseases are unpredictable, recurrent events that rapidly threaten global health and security. We aimed to identify public views regarding provision of information and consent to participate in primary and critical care clinical research during a future influenza-like illness pandemic.<h4>Methods</h4>Descriptive-interpretive qualitative study, using focus groups (n = 10) and semi-structured interviews (n = 16), with 80 members of the pu ...[more]

PMID: 28960624

Similar Datasets

Project description:BackgroundPeople experiencing homelessness (PEH) are known to be at higher risk of adverse health outcomes and premature mortality when compared to the housed population and often face significant barriers when attempting to access health services. This study aimed to better understand the specific health care needs of PEH and the barriers and facilitators associated with their timely and equitable access to health services in the European context.MethodsWe conducted an exploratory cross-national qualitative study involving people with lived experience of homelessness and health and social care professionals in Austria, Greece, Spain, and the UK. A total of 69 semi-structured interviews comprising 15 social care professionals, 19 health care professionals, and 35 PEH were completed, transcribed, and analysed thematically.ResultsFindings were organised into three overarching themes relating to the research question: (a) Health care needs of PEH, (b) Barriers to health care access, and (c) Facilitators to health care access. Overall, the general health of PEH was depicted as extremely poor, and mainstream health services were portrayed as ill-equipped to respond to the needs of this population. Adopting tailored approaches to care, especially involving trusted professionals in the delivery of care, was identified as a key strategy for overcoming existing barriers.ConclusionsThe results of this study indicate there to be a high degree of consistency in the health care needs of PEH and the barriers and facilitators associated with their access to health care across the various European settings. Homelessness in itself is recognized to represent an essential social determinant of health, with PEH at risk of unequal access to health services. Changes are thus required to facilitate PEH's access to mainstream primary care. This can also be further complemented by investment in 'in-reach' services and other tailored and person-centred forms of health care.Trial registrationThis study was registered retrospectively on June 6, 2022, in the registry of ClinicalTrials.gov under the number NCT05406687.

Project description:Previous studies have shown that cat owners seem to care less about their cats than dog owners care about their dogs - both in terms of their emotional state of attachment and in their willingness to pay for services that potentially benefit the animals. One study speculated that this difference is "driven by the behavior of the pet" - that the behavior of dogs encourages care more than the behavior of cats - and therefore is a universal phenomenon. However, previous studies mostly relied on convenience sampling of owners and were undertaken in single countries. Based on responses to a questionnaire from cat and dog owners drawn from representative samples of citizens (18 to 89 years of age) in three different European countries, Denmark, Austria and the United Kingdom, we tested the degree to which owners care about their cats and dogs. We used four different measures: Lexington attachment to pets scale (LAPS), possession of pet health insurance, willingness to pay for life-saving treatment, and expectation of veterinary diagnostic and treatment options. Dog owners had higher LAPS scores in all countries. However, the difference between dog and cat owners was greater in Denmark than in Austria and the United Kingdom. More dogs than cats were insured in all three countries, but the ratio was much less skewed in favor of dogs in the United Kingdom compared to Denmark. In terms of expensive life-saving treatment, in every country, more dog owners than cat owners were willing to spend over a certain amount, but the differences were much more pronounced in Denmark compared to the United Kingdom. In Denmark and Austria, dog owners expected more veterinary treatment options to be available, but species made no difference to the expectations of UK owners. People care more about their dogs than their cats in all countries, but with a clear cross-country variation and a very modest difference in the United Kingdom. Therefore, it does not seem to be a universal phenomenon that people care much less about their cats than their dogs. This finding has practical implications for future efforts to expand the level of veterinary services provided for cat owners.

Project description:Background and Objectives: Endometriosis causes significant personal and societal burden. Despite this, research funding lags behind other chronic conditions. Determining where to prioritise these limited funds is therefore vital. Research priorities may also differ between individuals with endometriosis and clinicians/researchers. The aim of this research project is to explore research priorities and factors shaping participation in endometriosis research from the perspective of people with endometriosis in Australia. Materials and Methods: Four focus groups involving 30 people with endometriosis were conducted and analysed using qualitative inductive content analysis. Results: Two categories were developed from the data: unmet research needs and motivators and barriers to participation in endometriosis research. Participants expressed interest in developing non-invasive diagnostic tools and a more multidisciplinary or holistic approach to treatment. Participants urgently desired research on treatment options for symptom management, with many prioritising non-hormonal treatments, including medicinal cannabis and complementary medicine. Others prioritised research on the causes of endometriosis over research on treatments to assist with prevention and eventual cure of the disease. The main drivers for participating in endometriosis research were hope for symptom improvement and a reduction in time to diagnosis. Research design features that were important in supporting participation included ease of access to testing centres (e.g., for blood tests) and sharing test results and automated data collection reminders, with simple stra-tegies to record data measurements. Research incentives for younger people with endometriosis and a broad dissemination of information about research projects was considered likely to increase participant numbers. Barriers included time commitments, a lack of flexibility around research appointments for data collection, travel or work commitments, concerns about the safety of some products, and trying to conceive a child. Conclusions: People with endometriosis were open to participating in research they felt aligned with their needs, with a significant focus on diagnostic tools and symptom relief. However, researchers must co-design approaches to ensure convenience and flexibility for research participation.

Dataset Information

Talking to the people that really matter about their participation in pandemic clinical research: A qualitative study in four European countries.

Background

Methods

Results

Conclusions

Publications

Talking to the people that really matter about their participation in pandemic clinical research: A qualitative study in four European countries.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets