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1.
Health Lit Res Pract ; 8(2): e47-e61, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38599576

ABSTRACT

BACKGROUND: The first 3 years of life offer an opportunity to prevent allergic diseases. Pediatricians are an important source of health information for parents. However, a certain degree of health literacy is necessary to understand, appraise, and apply preventive behavior, which can be supported by health literacy (HL) sensitive consultations and a HL friendly environment. OBJECTIVE: In this study, we want to shed light on how pediatricians in outpatient care in Germany advise on early childhood allergy prevention (ECAP) and how they consider parental HL. METHODS: We conducted 19 semi-standardized telephone interviews with pediatricians from North-Rhine-Westphalia and Bavaria. The interviews were audio-recorded, transcribed, pseudonymized, and subjected to content analysis. KEY RESULTS: Current ECAP recommendations were well known among our sample. Despite the shift of evidence from avoidance of allergens toward early exposure, providing advice on ECAP was considered non-controversial and it was widely assumed that recommendations were easy to understand and apply for parents. However, ECAP was treated as an implicit topic resonating among others like infant nutrition and hygiene. Regarding HL, our interview partners were not aware of HL as a concept. However, they deemed it necessary to somehow assess parental information level and ability to understand provided information. Formal HL screening was not applied, but implicit strategies based on intuition and experience. Concerning effective HL-sensitive communication techniques, interviewees named the adaptation of language and visual support of explanations. More advanced techniques like Teach Back were considered too time-consuming. Medical assistants were considered important in providing an HL-sensitive environment. Time constraints and the high amount of information were considered major barriers regarding HL-sensitive ECAP counseling. CONCLUSION: It seems warranted to enhance professional education and training for pediatricians in HL and HL-sensitive communication, to reach all parents with HL-sensitive ECAP counseling. [HLRP: Health Literacy Research and Practice. 2024;8(2):e47-e61.].


PLAIN LANGUAGE SUMMARY: We asked pediatricians how they advise parents on prevention of allergy in children. We found that pediatricians were well aware of the recommendations on allergy prevention, but they did not pass on all the information to parents. The HL of parents (that is the ability to find, understand, appraise, and apply health information) was not an important issue for the doctors.


Subject(s)
Health Literacy , Infant , Humans , Child , Child, Preschool , Parents/education , Language , Counseling , Communication
3.
Front Public Health ; 11: 1123107, 2023.
Article in English | MEDLINE | ID: mdl-37139377

ABSTRACT

Background: When parents want to make health-related decisions for their child, they need to be able to handle health information from a potentially endless range of sources. Early childhood allergy prevention (ECAP) is a good example: recommendations have shifted from allergen avoidance to early introduction of allergenic foods. We investigated how parents of children under 3 years old access, appraise and apply health information about ECAP, and their respective needs and preferences. Methods: We conducted 23 focus groups and 24 interviews with 114 parents of children with varied risk for allergies. The recruitment strategy and a topic guide were co-designed with the target group and professionals from public health, education, and medicine. Data were mostly collected via video calls, recorded and then transcribed verbatim. Content analysis according to Kuckartz was performed using MAXQDA and findings are presented as a descriptive overview. Results: Parents most frequently referred to family members, friends, and other parents as sources of ECAP information, as well as healthcare professionals (HCPs), particularly pediatricians. Parents said that they exchanged experiences and practices with their peers, while relying on HCPs for guidance on decision-making. When searching for information online, they infrequently recalled the sources used and were rarely aware of providers of "good" health information. While parents often reported trying to identify the authors of information to appraise its reliability, they said they did not undertake more comprehensive information quality checks. The choice and presentation of ECAP information was frequently criticized by all parent groups; in particular, parents of at-risk children or with a manifested allergy were often dissatisfied with HCP consultations, and hence did not straightforwardly apply advice. Though many trusted their HCPs, parents often reported taking preventive measures based on their own intuition. Conclusion: One suggestion to react upon the many criticisms expressed by parents regarding who and how provides ECAP information is to integrate central ECAP recommendations into regular child care counseling by HCPs-provided that feasible ways for doing so are identified. This would assist disease prevention, as parents without specific concerns are often unaware of the ECAP dimension of issues such as nutrition.


Subject(s)
Hypersensitivity , Parents , Humans , Child, Preschool , Focus Groups , Reproducibility of Results , Parents/psychology , Qualitative Research
4.
BMC Res Notes ; 16(1): 18, 2023 Feb 20.
Article in English | MEDLINE | ID: mdl-36803527

ABSTRACT

OBJECTIVES: Focus groups used for data collection in health research are increasingly conducted online. In two multi-center health research projects, we applied available methodological instructions for synchronous online focus groups (SOFGs). We describe necessary changes and specifications regarding the planning (recruitment, technology, ethics, appointments) and conduct (group composition, moderation, interaction, didactics) to enhance knowledge about the planning and conduct of SOFGs. RESULTS: Recruiting online proved to be challenging and necessitated direct and analogue recruiting, too. To ensure participation, less digital and more individual formats may be offered, e.g. telephone calls. Explaining verbally the specifics of data protection and anonymity in an online setting can foster participants' confidence to actively engage in the discussion. Two moderators, one moderating, one supporting technically, are advisable in SOFGs, however, due to limited nonverbal communication, roles and tasks need to be defined beforehand. Participant interaction is central to focus groups in general, but sometimes difficult to achieve online. Hence, smaller group size, sharing of personal information and moderators increased attention to individual reactions appeared helpful. Lastly, digital tools such as surveys and breakout rooms should be used with caution, as they easily inhibit interaction.


Subject(s)
Health Facilities , Humans , Focus Groups , Surveys and Questionnaires
5.
BMC Med Res Methodol ; 23(1): 17, 2023 01 16.
Article in English | MEDLINE | ID: mdl-36647023

ABSTRACT

BACKGROUND: Ensuring motivated and successful study participation is a key challenge in the design and conduct of health research studies. Previously, recruitment barriers and facilitators have been identified mainly from experience, and rarely based on theoretical approaches. We developed a framework of intentional and actional components of engaged participation in public health research studies (INTACT-RS), informed by psychological behavioral models. We aimed a) to identify precise indicators for each framework component and b) to better understand which components and decision processes are essential for study participants. METHODS: Within a multicenter research network, we applied various approaches to recruit parents of newborns, pediatricians, and midwives. All recruitment processes were documented from the perspective of both participants and researchers. We used different qualitative and quantitative data material, which we applied in a multistage process according to the basic principles of qualitative content analysis. RESULTS: INTACT-RS encompasses pre-intentional, intentional and actional phases with a total of n = 15 components covering all aspects of an individual's involvement with a research study. During intention formation, an understanding of efforts and benefits, why participation is valuable beyond contributing to research, and how others perceive the study, were particularly important to (potential) participants. Subsequently (intentional phase), participants consider how and when participation is compatible with their own resources, ability and availability, and hence seek for close communication with, and flexibility and support from the research team. During and after (initial) participation (actional phase), participants' assessment of whether expectations and interests have been met impact crucial further steps, especially the willingness to continue and to recommend participation to others. A strong topic-wise and or supportive participation interest as well as active, continuous exchange with the researchers appeared to be central determinants of study completion and data validity. CONCLUSIONS: A theoretical framework is now available to plan and conduct recruitment of different target groups, which accounts for essential motivational and volitional decision-making processes. Based on empirically specified constructs, possible barriers can be addressed even before the initial recruitment process. Therefore, recommendations for scientific practice have been formulated.


Subject(s)
Communication , Public Health , Infant, Newborn , Humans , Motivation , Qualitative Research
7.
Health Expect ; 26(1): 555-565, 2023 02.
Article in English | MEDLINE | ID: mdl-36482880

ABSTRACT

BACKGROUND: Parents of infants and young children may have specific health information needs and preferences, as they are responsible for their children's health. COVID-19 posed many challenges for families, not least in terms of the constantly updated disease-prevention guidelines. However, little is known about parents' experiences with this unprecedented situation, that is, how and where they seek, use and evaluate COVID-19 (child)-specific health information. We aimed to find out more about this to provide insights to health (information) providers when communicating pandemic information to parents. METHODS: We conducted semistructured telephone interviews (August to October 2020) with a purposively selected sample of 20 German-speaking and 10 Arabic-speaking parents of children up to 4 years old. Recruitment occurred through multiple channels, including childcare institutions and social media. Qualitative content analysis of the interview transcripts illustrates the main differences between the two groups. RESULTS: By the time the interviews were conducted (mid-2020), some parents reported to seek information less actively or not at all, compared to the beginning of COVID-19. German speakers frequently used Google to obtain information, whereas Arabic speakers mentioned social media (particularly Facebook) as a central source. However, medical providers were the most trusted source for child health. Though determining the credibility of online information was difficult for some parents, others, mostly German speakers (middle-high education), were aware of some author-related criteria. When deciding on information use, parents often rely on their own judgement and gut instinct. Besides the necessity to disseminate information via multiple outlets to reach all parents, Arabic speakers desired audio-visual and translation tools to facilitate understanding. DISCUSSION AND PUBLIC CONCLUSION: Apart from education, language and knowledge of the health system and of the attributes of credible information may determine its quality and consequent decisions. There seems to be a considerable need to foster knowledge about reliable information sources, a greater understanding of the range of quality criteria and specific support for nonnative speakers, not least to better inform parents' decision-making. PATIENT AND PUBLIC CONTRIBUTION: A parent panel (n = 7) contributed to gathering ideas regarding recruitment, discussing initial results and the choice of topics and questions for a second interview phase.


Subject(s)
COVID-19 , Child , Infant , Humans , Child, Preschool , Parents/education , Qualitative Research , Language
9.
Article in English | MEDLINE | ID: mdl-35742562

ABSTRACT

Chronic diseases account for a considerable part of the strain on health care systems [...].


Subject(s)
Health Literacy , Chronic Disease , Delivery of Health Care , Humans
10.
BMJ Open ; 11(11): e047733, 2021 11 16.
Article in English | MEDLINE | ID: mdl-34785543

ABSTRACT

INTRODUCTION: Paediatricians, general practitioners (GPs) and midwives in primary care are important sources of information for parents on early childhood allergy prevention (ECAP). Research has shown that preventive counselling by health professionals can be effective in improving patients' health literacy (HL) and health behaviour. Providing effective advice relies on two factors. First, health professionals need be up-to-date with research evidence on ECAP, to consider popular misconceptions and fears and to translate this knowledge into clear recommendations for parents (knowledge translation). Second, they need to know and apply counselling techniques and create a practice setting which accommodates parental HL needs (health literacy-responsive care). The objective of this study is to explore and assess how German health professionals take up and translate ECAP evidence into appropriate recommendations for parents, how they consider HL in counselling and practice organisation and what barriers and enablers they find in their performance of HL-responsive ECAP. METHODS AND ANALYSIS: The study has a sequential mixed-method design, in two phases. In the first phase, qualitative semi-structured expert interviews will be conducted with health professionals (paediatricians, GPs and midwives) at primary care level and professional policy level. Data collection is ongoing until January 2022. In the second phase, based on the qualitative results, a standardised questionnaire will be developed, and pilot-tested in a wider population of German health professionals. The findings of both phases will be integrated. ETHICS AND DISSEMINATION: The study has received ethical approval from the Ethics Committee of the University of Regensburg (18-1205-101). The results will be published in international peer-reviewed open access journals and via presentations at scientific conferences. The results will also be shared with German health professionals, decision-makers and potential funders of interventions.


Subject(s)
Health Literacy , Hypersensitivity , Child, Preschool , Health Personnel , Humans , Research Design , Translational Science, Biomedical
11.
JMIR Res Protoc ; 10(1): e25474, 2021 Jan 20.
Article in English | MEDLINE | ID: mdl-33470948

ABSTRACT

BACKGROUND: In early childhood allergy prevention (ECAP), parents act on behalf of their children. Parental health literacy and the availability of high-quality information, both online and offline, are crucial for effective ECAP. Recent research highlights three main points. First, parents need sufficient health literacy to discriminate between high-quality and low-quality information. Second, ECAP information behaviors may vary between phases of childhood development and according to individual circumstances. Third, to strengthen user-centeredness of available services, a better overview of parents' information practices and needs and how they handle uncertainties is required. OBJECTIVE: This study aims to explore why, how, and when parents search for and apply ECAP-specific health information and which individual (eg, understanding of advice) and organizational challenges (eg, information services, information complexity, and changing recommendations) they perceive and how they handle them. This study also aims to assess the needs and preferences that parents express for future information formats and contents. The findings should inform the practical design of ECAP information as well as formats and channels specific to different parent groups. METHODS: The above-named issues will be explored with parents in four German cities as one element in our efforts to cover the spectrum of perspectives. Based on a mixed methods design, including qualitative and quantitative assessments, the first year serves to prepare focus groups, a piloted focus group guide, a short standardized survey adapted from the European Health Literacy Project, recruitment channels, and the recruitment of participants. After conducting 20 focus groups in the second year, data will be analyzed via a constant comparison method in the third year. Based on this, practice implications on channels (ie, Where?), formats (ie, How?), and contents (ie, What?) of ECAP-specific information will be derived and discussed with parents and associated project partners before its dissemination to relevant ECAP actors (eg, childcare institutions and pediatricians). RESULTS: The study began with preselection of recruitment channels, drafting of recruitment and study information for potential participants, and agreement on a first full version of the guideline. Then, a detailed contact list was compiled of health professionals, administrative and social institutions, and relevant social media channels (N=386) to be approached for assistance in contacting parents. The recruitment was postponed due to COVID-19 and will start in January 2021. CONCLUSIONS: ECAP is a relevant example for assessing how users (ie, parents) handle not only health information but the various and continuous changes, uncertainties, and controversies attached to it. So far, it is unclear how parents implement the respective scientific recommendations and expert advice, which is why this study aims to inform those who communicate with parents about ECAP information. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/25474.

12.
Patient Educ Couns ; 104(2): 223-234, 2021 02.
Article in English | MEDLINE | ID: mdl-33109429

ABSTRACT

OBJECTIVE: The aim of this rapid scoping review, for which only studies from the general population were considered, was to describe the extent of existing research on HL in the context of previous coronavirus outbreaks (SARS-CoV-1, MERS-CoV and SARS-CoV-2). METHODS: We searched major databases and included publications of quantitative and qualitative studies in English and German on any type of research on the functional, critical and communicative domains of HL conducted in the context of the three outbreaks in the general population. We extracted and tabulated relevant data and narratively reported where and when the study was conducted, the design and method used, and how HL was measured. RESULTS: 72 studies were included. Three investigated HL or explicitly referred to the concept of HL, 14 were guided by health behaviour theory. We did not find any study designed to develop or psychometrically evaluate pandemic/epidemic HL instruments, or relate pandemic/epidemic or general HL to a pandemic/epidemic outcome, or any controlled intervention study. Type of assessment of the domains of HL varied widely. CONCLUSION: Theory-driven observational studies and interventions, examining whether pandemic-related HL can be improved are needed. PRACTICE IMPLICATIONS: The development and validation of instruments that measure pandemic-related HL is desirable.


Subject(s)
COVID-19 , Health Knowledge, Attitudes, Practice , Health Literacy , Humans , Pandemics , SARS-CoV-2
13.
Z Evid Fortbild Qual Gesundhwes ; 156-157: 89-99, 2020 Nov.
Article in German | MEDLINE | ID: mdl-33055014

ABSTRACT

BACKGROUND AND OBJECTIVES: In recent years, the reporting on patient and public involvement (PPI) in health-related research has gained significantly in importance. However, little attention is being paid to the selection of target groups or participating citizens and patients. Individual contributions already point out that the selection is often described in a complex but ambiguous way; for example, individual groups are often not sufficiently differentiated from each other. The aim of our study is to provide an overview of the main topics, questions and challenges that are specific to the selection of participants in PPI by means of an explorative sample of different PPI documents (studies with PPI, studies on PPI, PPI guidelines, PPI websites, PPI journals). Based on this overview, we will make recommendations to help authors of studies and other relevant stakeholders in the planning, implementation and reporting of participant selection. METHODS: First, the explorative sample of the above-mentioned PPI documents was identified by conducting a systematic database and online search. A total of 46 documents were taken into account, including 11 studies with PPI, 12 studies on PPI, 12 guidelines, 6 websites and 5 journals. Relevant text passages were extracted from each of them and evaluated using deductively and inductively developed topic-specific categories. RESULTS: Overall, the selected PPI documents significantly vary a) in the use of terms, b) in the detailing of the individual aspects of participant selection, and c) in the description of the planning and implementation of participant selection. For the latter, there is usually a lack of systematic, comprehensive explanations, e. g., on how to weigh up a relevant number of participants, on objectives and methods in the selection process and on how to prepare participants. DISCUSSION: The various documents about and contributions to the topic of PPI should, in future, report more transparently and systematically on the selection of participants, especially to create practical added value for authors of studies. This includes, in particular, the description of the selection (studies with PPI), a complete overview of all relevant steps of the selection process (PPI guidelines), recommendations on how to deal with representativeness (studies on PPI), notes on reporting PPI (journals) as well as overviews of individual steps of the implementation process (PPI websites).


Subject(s)
Biomedical Research , Health Services Research , Patient Participation , Germany , Humans , Patient Selection
15.
Interact J Med Res ; 8(4): e12225, 2019 Oct 24.
Article in English | MEDLINE | ID: mdl-31651401

ABSTRACT

BACKGROUND: Allergic diseases, such as allergic asthma, rhinitis, and atopic eczema, are widespread, and they are a considerable burden on the health care system. For patients and health care professionals, Web-based training programs may be helpful to foster self-management and provide allergy-specific information, given, for instance, their good accessibility. OBJECTIVE: This study aimed to assess an exploratory sample of publicly available allergy-specific Web-based training programs-that is, interactive, feedback-oriented Web-based training platforms promoting health behavior change and improvement of personal skills-with regard to (1) general characteristics, aims, and target groups and (2) the extent to which these tools meet established criteria for the reporting, methods, and content of evidence-based (digital) health information and education. METHODS: Web-based training programs were identified via an initial Google search and a search of English and German language websites of medical and public health services, such as the European Centre for Allergy Research Foundation (German), Asthma UK, and Anaphylaxis Canada. We developed a checklist from (1) established guidelines for Web-based health information (eg, the Journal of the American Medical Association benchmarks, DISCERN criteria, and Health On the Net code) and (2) a database search of related studies. The checklist contained 44 items covering 11 domains in 3 areas: (1) content (completeness, transparency, and evidence), (2) structure (data safety and qualification of trainers and authors), and (3) impact (effectiveness, user perspective, and integration into health care). We rated the Web-based training programs as completely, partly, or not satisfying each checklist item and calculated overall and domain-specific scores for each Web-based training program using SPSS 23.0 (SPSS Inc). RESULTS: The 15 identified Web-based training programs covered an average of 37% of the items (score 33 out of 88). A total of 7 Web-based training programs covered more than 40% (35/88; maximum: 49%; 43/88). A total of 5 covered 30% (26/88) to 40% (35/88) of all rated items and the rest covered fewer (n=3; lowest score 24%; 21/88). Items relating to intervention (58%; 10/18), content (49%; 9/18), and data safety (60%; 1/2) were more often considered, as opposed to user safety (10%; 0.4/4), qualification of staff (10%; 0.8/8), effectiveness (16%; 0.4/2), and user perspective (45%; 5/12). In addition, in 13 of 15 Web-based training programs, a minimum of 3 domains were not covered at all. Regarding evidence-based content, 46% of all Web-based training programs (7/15) scored on use of scientific research, 53% on regular information update (8/15), and 33% on provision of references (5/15). None of 15 provided details on the quality of references or the strength of evidence. CONCLUSIONS: English and German language allergy-specific Web-based training programs, addressing lay audiences and health care professionals, conform only partly to established criteria for the reporting, methods, and content of evidence-based (digital) health information and education. Particularly, well-conducted studies on their effectiveness are missing.

16.
PLoS One ; 14(1): e0204187, 2019.
Article in English | MEDLINE | ID: mdl-30615619

ABSTRACT

Research on patient and public involvement so far concentrates on defining involvement, describing its methods, and analyzing involvement practices in various individual research disciplines. There is little empirical data on the process of and aims for selecting (lay) PPI participants, and to what extend they can and should be representative of the population at large. To explore practices and perceptions on these issues and on future PPI conduct more generally, we sent an electronic survey to authors who published involvement activities as part of their studies in medical and social science journals. We identified such authors with a systematic search of five databases and applied descriptive statistics for analysis. Of those who returned the survey (n = 127 of 315; 40%), most had previously conducted involvement activities (73%). 45% reported more than one type of involvement, e.g. consultation and deliberation and participation (14%) and to have recruited more than one type of participant for their PPI activity (56%), e.g. 'lay publics' and 'expert publics' (33% of 71). Representativeness was often seen as a crucial objective when selecting PPI participants, while less than half found it very easy (9%) or rather easy (34%) to select participants. Many respondents considered achieving good representativeness difficult (52%) or very difficult (17%). They identified significant respective challenges and desired more guidance on various aspects of planning and conducting PPI (56%). 55% thought that the concept of "involvement" should be changed or improved. We conclude that recruiting lay people for PPI activities and deciding about and handling representativeness are controversial in current PPI practice, given the manifold challenges mentioned by the survey respondents. Our findings may inform further research particularly regarding-the potentially many cases of-unpublished PPI.


Subject(s)
Community Participation , Health Services Research/organization & administration , Patient Participation , Research Personnel/statistics & numerical data , Consumer Behavior , Health Services Research/methods , Humans , Research Design , Research Personnel/psychology , Researcher-Subject Relations/psychology , Surveys and Questionnaires/statistics & numerical data
17.
Health Res Policy Syst ; 14(1): 69, 2016 Sep 17.
Article in English | MEDLINE | ID: mdl-27639695

ABSTRACT

BACKGROUND: The European Union's (EU) Clinical Trials Directive was replaced by an EU-Regulation as of 2016. The policy revision process was subject to a formal impact assessment exercised by the European Commission (EC) from 2008 to 2014. Following the EU principles of Good Governance, deliberation with stakeholders was an integral part of this impact assessment and the policy formulation process. Hence, two public consultations (PCs) were held by the EC in 2009 and 2011, respectively. Various stakeholders contributed and submitted their written input to the EC. Though often cited in the further revision process, the input gathered in the PC was not communicated with full transparency and it is unclear how and to what extent the input has been processed and used in the policy formulation. The objective of this study was an analysis of submissions to both PCs in order to systematically present what topics have been discussed and which possible policy options have been raised by the stakeholders. METHODS: All written submissions publicly available were downloaded from the EC's homepage and assessed for stakeholder characteristics. Thematic text analysis was applied to assess the full text of a random sample of 33% of these submissions. RESULTS: A total of 198 different stakeholders from the EU and the United States of America contributed to one or both of the two PCs. In total, 44 various themes have been addressed that could be clustered under 24 main themes, including the articulation of problems as well as possible policy solutions to face these problems. CONCLUSION: The two PCs on the Clinical Trials Directive were highly appreciated by the various stakeholders and their input allowed an in-depth view on their particular interests. This input provided a rich source of information for all stakeholders in the field of clinical trials as well as to the EC's impact assessment. Although the EC obviously gathered a large quantity of expert knowledge on practical implications of trials legislation by consulting stakeholders, it remained unclear how this input was used in the development of the new regulation. For the sake of transparency, it is recommended that in future PCs the EC uses better standardized methods for a more transparent analysis and presentation of results.


Subject(s)
Clinical Trials as Topic/legislation & jurisprudence , Organizations , Policy Making , Public Policy , Attitude , European Union , Government , Humans , Problem Solving , Referral and Consultation , United States
18.
Public Health Genomics ; 19(4): 193-202, 2016.
Article in English | MEDLINE | ID: mdl-27027649

ABSTRACT

BACKGROUND: Public involvement activities (PIAs) may contribute to the governance of ethically challenging biomedical research and innovation by informing, consulting with and engaging the public in developments and decision-making processes. For PIAs to capture a population's preferences (e.g. on issues in whole genome sequencing, biobanks or genome editing), a central methodological requirement is to involve a sufficiently representative subgroup of the general public. While the existing literature focusses on theoretical and normative aspects of 'representation', this study assesses empirically how such considerations are implemented in practice. It evaluates how PIA reports describe representation objectives, the recruitment process and levels of representation achieved. METHODS: PIA reports were included from a systematic literature search if they directly reported a PIA conducted in a relevant discipline such as genomics, biobanks, biotechnology or others. PIA reports were analyzed with thematic text analysis. The text analysis was guided by an assessment matrix based on PIA-specific guidelines and frameworks. RESULTS: We included 46 relevant reports, most focusing on issues in genomics. 27 reports (59%) explicitly described representation objectives, though mostly without adjusting eligibility criteria and recruiting methods to the specific objective. 11 reports (24%) explicitly reported to have achieved the intended representation; the rest either reported failure or were silent on this issue. CONCLUSION: Representation of study samples in PIAs in biomedical research and innovation is currently not reported systematically. Improved reporting on representation would not only improve the validity and value of PIAs, but could also contribute to PIA results being used more often in relevant policy and decision-making processes.


Subject(s)
Biomedical Research/ethics , Community Participation/methods , Public Opinion , Ethics, Research , Humans , Qualitative Research
19.
PLoS One ; 9(12): e113274, 2014.
Article in English | MEDLINE | ID: mdl-25469705

ABSTRACT

BACKGROUND: A recent report from the British Nuffield Council on Bioethics associated 'emerging biotechnologies' with a threefold challenge: 1) uncertainty about outcomes, 2) diverse public views on the values and implications attached to biotechnologies and 3) the possibility of creating radical changes regarding societal relations and practices. To address these challenges, leading international institutions stress the need for public involvement activities (PIAs). The objective of this study was to assess the state of PIA reports in the field of biomedical research. METHODS: PIA reports were identified via a systematic literature search. Thematic text analysis was employed for data extraction. RESULTS: After filtering, 35 public consultation and 11 public participation studies were included in this review. Analysis and synthesis of all 46 PIA studies resulted in 6 distinguishable PIA objectives and 37 corresponding PIA methods. Reports of outcome translation and PIA evaluation were found in 9 and 10 studies respectively (20% and 22%). The paper presents qualitative details. DISCUSSION: The state of PIAs on biomedical research and innovation is characterized by a broad range of methods and awkward variation in the wording of objectives. Better comparability of PIAs might improve the translation of PIA findings into further policy development. PIA-specific reporting guidelines would help in this regard. The modest level of translation efforts is another pointer to the "deliberation to policy gap". The results of this review could inform the design of new PIAs and future efforts to improve PIA comparability and outcome translation.


Subject(s)
Biomedical Research/ethics , Community Participation , Humans , Public Opinion , Qualitative Research
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