Table 1 Case study presentations
Case study AThe National Health Service collects individual-level data on patients throughout the United Kingdom (UK). It sends data for 1 million patients to a research institution; data includes age, gender, ethnicity, mental health diagnosis, deaths, treatment and treatment response over a 3-year period. As data are collected at General Practitioners under an opt-out system, individuals do not provide consent. Data from various parts of the health and care system are linked for comparison and analysis. The research outcomes and analyses are provided to the government and used to inform national reporting and analysis, commissioning, service planning, monitoring policies and legislation, local and national performance management and benchmarking.
Guiding questions
  • What are the benefits?

  • What are the risks?

  • Are you okay with your data being used in this way?

  • Are you more okay with some information being used than others? (Age versus diagnosis or treatment?)

  • What would make you okay with your data being used in this way?

Case study BA mental health charity organises peer support groups for people at risk of mental-ill health. In order to evaluate the effectiveness of the programme and guide future interventions, the charity collects data on ethnicity, age, sexual orientation, gender, religion, income, employment status, condition and years with the diagnosis. In addition, they have participants take questionnaires to measure wellbeing and depression. The charity runs analyses with the data to look for correlations between demographic factors and mental health. They will publish the research and use the results to inform other programmes.
Guiding questions
  • What are the benefits?

  • Are there any concerns?

  • What would the charity need to do to make you comfortable sharing this information?

  • Is there any information you wouldn’t want to disclose?

Case study CPatients with a mental health condition can download an app targeting improved mental health. Individuals can use the app to record feelings and stress, monitor their medication and get advice from online counsellors. When downloading the app, individuals must check that they have read and feel comfortable with a lengthy page outlining the terms and conditions. The terms and conditions mention that the app collects information on age, gender, location, ethnicity, diagnosis and information shared through activity on the app. The information is then provided to research organisations to understand how groups deal with stress, perceive feelings and adhere to medication and treatment. Additionally, the app conducts market research and assesses how engagement with the app drives mental health outcomes.
Guiding questions
  • What are the benefits?

  • What are the risks?

  • Would you download and use this app?

  • Would you read the terms and conditions?

  • What would make you comfortable with using this type of app?

  • Would you be okay having your information used to improve the app?