RESUMO
BACKGROUND: Primary care research networks can generate important information in the setting where most patients are seen and treated. However, this requires a suitable IT infrastructure (ITI), which the North Rhine-Westphalian general practice research network is looking to implement. OBJECTIVE: This mixed methods research study aims to evaluate (study 1) requirements for an ITI and (study 2) the usability of an IT solution already available on the market, the FallAkte Plus (FA+) system for the North Rhine-Westphalian general practice research network, which comprises 8 primary care university institutes in Germany's largest state. METHODS: In study 1, a survey was conducted among researchers from the institutes to identify the requirements for a suitable ITI. The questionnaire consisted of standardized questions with open-ended responses. In study 2, a mixed method approach combining a think-aloud approach and a quantitative survey was used to evaluate the usability and acceptance of the FA+ system among 3 user groups: researchers, general practitioners, and practice assistants. Respondents were asked to assess the usability with the validated system usability scale and to test a short questionnaire on vaccination management through FA+. RESULTS: In study 1, five of 8 institutes participated in the requirements survey. A total of 32 user requirements related primarily to study management were identified, including data entry, data storage, and user access management. In study 2, a total of 36 participants (24 researchers and 12 general practitioners or practice assistants) were surveyed in the mixed methods study of an already existing IT solution. The tutorial video and handouts explaining how to use the FA+ system were well received. Researchers, unlike practice personnel, were concerned about data security and data protection regarding the system's emergency feature, which enables access to all patient data. The median overall system usability scale rating was 60 (IQR 33.0-85.0), whereby practice personnel (median 82, IQR 58.0-94.0) assigned higher ratings than researchers (median 44, IQR 14.0-61.5). Users appreciated the option to integrate data from practices and other health care facilities. However, they voted against the use of the FA+ system due to a lack of support for various study formats. CONCLUSIONS: Usability assessments vary markedly by professional group and role. In its current stage of development, the FA+ system does not fully meet the requirements for a suitable ITI. Improvements in the user interface, performance, interoperability, security, and advanced features are necessary to make it more effective and user-friendly. Collaborating with end users and incorporating their feedback are crucial for the successful development of any practice network research ITI.
RESUMO
BACKGROUND: Making decisions about PSA screening tests is challenging, as it requires both knowledge of the possible benefits and harms of screening and an individual assessment of the patient's values. Our research explores how much and what information men perceive to be necessary with regard to screening for prostate cancer. OBJECTIVE: To explore men's information and associated needs for decision making in PSA testing. DESIGN: Qualitative interview study. SETTING AND PARTICIPANTS: We interviewed 32 men (aged 55-69) about their decision making on PSA screening following counselling with a Decision Aid at their GP's or urologist's practice in Germany. MAIN OUTCOME MEASURES: Men's expressed needs for decision making in PSA testing. METHODS: All interviews were transcribed verbatim and analysed by framework analysis. RESULTS: Comprehensive pre-screening counselling is needed. For the men in our study, information about test (in)accuracy, the benefit-harm balance and consequences of the test were relevant and surprising. Additional needs were for interpretation support, a take-home summary and time for deliberation. For several men, their physician's attitude was of interest. After being well-informed, most men felt empowered to make a preference-based decision on their own. DISCUSSION: Men were surprised by what they learned, especially regarding the accuracy and possible harms of screening. There is large variation in the breadth and depth of information needed, and some controversy regarding the consequences of testing. CONCLUSION AND PATIENT CONTRIBUTION: A core set of information should be offered before men make their first PSA screening decision. Information about biopsy and associated side-effects could follow in a short form, with details only on request. Knowledge about a high rate of false-positive test results beforehand might help men handle a suspicious test result.
