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be disseminated in different ways. For example, an overview of the findings may be posted on study websites or social media pages. Participants can then be signposted to such locations by including a link within the questionnaire, along with the date when the lay summary will be made available. Hard copy lay summaries may be distributed through the organisations that have been involved in recruitment for the study, including for example healthcare trusts and/or local and national voluntary and community organisations. Increasingly, researchers are also considering
give out the study packs and assist people in completing the survey where needed. We also utilised our existing networks, including social media and our contacts with local service user and carer groups, to publicise the study. Together, these activities help the study team to collect all the data that they needed. 81 BEE (RESEARCH) PRINT.indd 81 11/05/2018 16:15 Reflective exercise Think of a healthcare technology and imagine that you are designing an economic evaluation for that technology. • What would it be compared to? costs would you include in the
Measure (or PROM) – a questionnaire, completed by a service user, to measure quality involvement in care planning. We met as a group to draft the questions and discuss how they should be worded. As PPI representatives and researchers, we used our existing networks, including social media and our contacts with local service user and carer groups, to get as many people as possible to complete our new questionnaire. This gave us lots of data and meant that we could validate the measure properly. We have been able to develop a short 14-item questionnaire that is valid and
, digital forum discussions, social media posts and video recordings. For example, when interviewing participants about their experience of living with a chronic condition, you may want to ask them to capture their experience using photographs. These can be treated as a unit of data and analysed thematically in addition to the transcripts from interviews, and presented to support interpretations. (Figure 27) 112 BEE (RESEARCH) PRINT.indd 112 11/05/2018 16:16 A Research Handbook for Patient and Public Involvement Researchers Figure 27 Example of photographic data
, dismissive or misleading questions (Rose, 2003) ✔ Insight into what might cause distress and how to manage this appropriately (Nicholls et al., 2003) ✔ Feedback on proposal and all supporting documentation (e.g. participant information sheets, consent forms, adverts etc.) Once a study has all the necessary approvals, it can begin to recruit research participants. The precise recruitment strategy that is used will have been outlined in the ethics submission. It could, for example, include recruiting in person at clinics, or via poster display, or via social media. Patient