Dataset Information

Evidence-based health information from the users' perspective--a qualitative analysis.

ABSTRACT:

Background

Evidence-based information is a precondition for informed decision-making and participation in health. There are several recommendations and definitions available on the generation and assessment of so called evidence-based health information for patients and consumers (EBHI). They stress the importance of objectively informing people about benefits and harms and any uncertainties in health-related procedures. There are also studies on the comprehensibility, relevance and user-friendliness of these informational materials. But to date there has been little research on the perceptions and cognitive reactions of users or lay people towards EBHI. The aim of our study is to define the spectrum of consumers' reaction patterns to written EBHI in order to gain a deeper understanding of their comprehension and assumptions, as well as their informational needs and expectations.

Methods

This study is based on an external user evaluation of EBHI produced by the German Institute for Quality and Efficiency in Health Care (IQWiG), commissioned by the IQWiG. The EBHI were examined within guided group discussions, carried out with lay people. The test readers' first impressions and their appraisal of the informational content, presentation, structure, comprehensibility and effect were gathered. Then a qualitative text analysis of 25 discussion transcripts involving 94 test readers was performed.

Results

Based on the qualitative text analysis a framework for reaction patterns was developed, comprising eight main categories: (i) interest, (ii) satisfaction, (iii) reassurance and trust, (iv) activation, (v) disinterest, (vi) dissatisfaction and disappointment, (vii) anxiety and worry, (viii) doubt.

Conclusions

Many lay people are unfamiliar with core characteristics of this special information type. Two particularly critical issues are the description of insufficient evidence and the attendant absence of clear-cut recommendations. Further research is needed to examine strategies to explain the specific character of EBHI so as to minimize unintended or adverse reaction patterns. The presented framework describes the spectrum of users' reaction patterns to EBHI. It may support existing best practice models for editing EBHI.

SUBMITTER: Hirschberg I

PROVIDER: S-EPMC3852570 | biostudies-literature | 2013 Oct

REPOSITORIES: biostudies-literature

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Publications

Evidence-based health information from the users' perspective--a qualitative analysis.

Hirschberg Irene I Seidel Gabriele G Strech Daniel D Bastian Hilda H Dierks Marie-Luise ML

BMC health services research 20131010

<h4>Background</h4>Evidence-based information is a precondition for informed decision-making and participation in health. There are several recommendations and definitions available on the generation and assessment of so called evidence-based health information for patients and consumers (EBHI). They stress the importance of objectively informing people about benefits and harms and any uncertainties in health-related procedures. There are also studies on the comprehensibility, relevance and user ...[more]

PMID: 24112403

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Project description:BackgroundThe Guideline Evidence-based Health Information was published in 2017 and addresses health information providers. The long-term goal of the guideline is to improve the quality of health information. Evidence-based health information represents a prerequisite for informed decision-making. Health information providers lack competences in evidence-based medicine. Therefore, our aim was to develop and pilot-test a blended learning training programme for health information providers to enhance application of the guideline.Methods1.DevelopmentWe developed the training programme according to the Medical Research Council guidance for developing and evaluating complex interventions. The training programme was planned on the basis of problem-based learning. It aims to impart competences in evidence-based medicine. Furthermore, it comprises the application of criteria for evidence-based health information. 2.Pilot testing: We conducted a qualitative pilot study focusing on the acceptability and feasibility of the training programme. Health information providers were recruited and in-house training sessions were offered. Feasibility and acceptability were explored by structured class observations and in semi-structured focus group interviews with the participants after the training sessions. The transcripts and documentations were analysed using qualitative content analysis according to Mayring. The training was revised iteratively according to the results.ResultsWe conducted two training courses with 17 participants between November 2018 and March 2019. The adequacy of the training for the target group was identified as a major issue. There was significant heterogeneity concerning previous knowledge. Some wished to delve deeper while others seemed to be overwhelmed. In general, the work tasks were understandable. However, the participants asked for a more detailed theoretical introduction in advance. The practical relevance of the evidence-based medicine contents was rated rather low compared to the content about evidence-based health information. Based on these results, we revised the programme.ConclusionsOverall, the training proved to be feasible for implementation. Meeting the needs of all the participants was a challenge, since they were heterogeneous. Not all of them will be able or intend to implement the training contents into their working routine to the full extent. The implementation will be evaluated in a randomised controlled trial.

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Project description:BackgroundEvidence-based health policy (EBHP) development is critical to the judicious use of public funds. EBHPs increase transparency, accountability, effectiveness, and efficiency of policies. Encouraging collaboration between researchers or knowledge producers and policy makers is important because both communities have distinct professional cultures, resulting in them working separately without understanding each other. Knowledge sharing is a complex process that requires understanding of cultural aspects that may reduce cultural differences and increase the use of common language. Health information technology (HIT) is a useful tool to increase knowledge translation, which may result in the transparent use of evidence and networking in developing EBHPs. Our vision is to leverage HIT tools for a better health system that includes digitalized, open source, evidence-based, and transparent ways for collaboration and development of robust mechanisms and for sharing of synthesized evidence with knowledge user-friendly forms.ObjectiveThe aim of this study is to develop a conceptual framework on Knowledge translation and health Information Technology for Transparency (KhITT) in policy making and EBHPs (ie, the KhITT framework). The framework will be informed by the views of four key stakeholder groups (ie, policy makers, knowledge producers, HIT professionals, and the public) toward EBHP. The informants may also describe practices that demonstrate the EBHP development process and suggest technology platforms to enable this process.MethodsWe propose an exploratory, descriptive qualitative study to take place in British Columbia, Canada, using in-depth semistructured interviews. To ensure data saturation and trustworthiness, we will use a nonprobability, purposive snowball sample of up to 15 eligible participants in each of the four stakeholder groups. We will analyze the data using content analysis.ResultsThe KhITT framework focuses on various stakeholders' perspectives to better understand their perceived needs and priorities in identifying issues with EBHP, in order to make informed recommendations. Ethics approval has been obtained by the harmonized Behavioural Research Ethics Board at the University of British Columbia. We anticipate that we will complete data collection and analysis by December 2020. Preliminary results will be published in summer 2021.ConclusionsOur ultimate goal of this study is to develop a conceptual framework and describe the technology platforms that would enable the EBHP process. We anticipate that our rigorous content analysis will be able to produce insights and themes that are able to address our objectives, contribute to an in-depth understanding of the EBHP process within British Columbia, highlight all influential factors, explicitly disseminate and communicate the study results, identify issues with EBHP and provide informed recommendations to address them, and enhance efforts toward transparent EBHPs.International registered report identifier (irrid)PRR1-10.2196/16268.

Project description:BackgroundAlthough the electronic health record system adoption rate has reached 96% in the United States, implementation and usage of health information exchange (HIE) is still lagging behind. Blockchain has come into the spotlight as a technology to solve this problem. However, there have been no studies assessing the perspectives of different stakeholders regarding blockchain-based patient-centered HIE.ObjectiveThe objective of this study was to analyze the awareness among patients, health care professionals, and information technology developers toward blockchain-based HIE, and compare their different perspectives related to the platform using a qualitative research methodology.MethodsIn this qualitative study, we applied grounded theory and the Promoting Action on Research Implementation in the Health Service (PARiHS) framework. We interviewed 7 patients, 7 physicians, and 7 developers, for a total of 21 interviewees.ResultsRegarding the leakage of health information, the patient group did not have concerns in contrast to the physician and developer groups. Physicians were particularly concerned about the fact that errors in the data cannot be easily fixed due to the nature of blockchain technology. Patients were not against the idea of providing information for clinical trials or research institutions. They wished to be provided with the results of clinical research rather than being compensated for providing data. The developers emphasized that blockchain must be technically mature before it can be applied to the health care scene, and standards of medical information to be exchanged must first be established.ConclusionsThe three groups' perceptions of blockchain were generally positive about the idea of patients having the control of sharing their own health information. However, they were skeptical about the cooperation among various institutions and implementation for data standardization in the establishment process, in addition to how the service will be employed in practice. Taking these factors into consideration during planning, development, and operation of a platform will contribute to establishing practical treatment plans and tracking in a more convenient manner for both patients and physicians. Furthermore, it will help expand the related research and health management industry based on blockchain.

Dataset Information

Evidence-based health information from the users' perspective--a qualitative analysis.

Background

Methods

Results

Conclusions

Publications

Evidence-based health information from the users' perspective--a qualitative analysis.

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