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Table 3 Examples of advice given by the committee, for each of the seven main topics

From: Patient involvement in cardiovascular research: a qualitative impact evaluation

Topic Examples of advice given by the patient committee
1) Methodology • “What are your selection criteria? What is your target group and when does a patient belong to this group?” • “A possible problem might be that the excretion of urine cannot be measured properly, as patients usually do not have a catheter.” • “Comatose patients cannot give their consent to participate. How will you inform the family or do they have to give their consent?”
2) Communication • “Results of the study will be shared in several ways. Don’t forget the general practitioner in this, as that’s where the first signalling [of risks for disease] occurs.” • “It’s unclear if and how patients are informed about treatment options, and if they’re offered the chance to reject the treatment” • “It’s unclear how the research results will be shared afterwards with the patients who participated. Will they ever know in which group they were placed?”
3) Safety • “Where will the data be stored?” • “Description of possible risks is lacking. If there are any risks, patients should be informed about it before they decide to participate in the study” • “The risks of undergoing several MRI scans in a short period of time is unclearly described. Also, it’s unclear to me how many MRI scans will be needed.”
4) Understandability • “It’s a pity that the summary is in English [rather than Dutch]. It’s doable, but I had to google some abbreviations.” • “Too much medical terminology, e.g. renal, vasodilatation, diuresis etc. [...] more empathy is needed when you ask a lay man to think along.”
5) Patients’ role • “How are patients exactly involved? It says that they are involved, but not how.” • “Collaboration with Harteraad is described, but it is unclear how they can influence the proposal. In other words: we can say a lot, but are you able to do something with it as well?”
6) Background • “I miss information on the benefits of Shared Decision Making (SDM) and what currently goes wrong. [...] How many lives could be saved with SDM and how will it improve the Quality of Life of patients?” • “I miss the expected results and benefits [of the study] for patients. Also, I miss literature and numbers on the successes for existing interventions and how integration of these existing interventions with those in this study will lead to better results.”
7) Applicability • “What will happen when risk factors can be recognized earlier, and who is going to do something with that information? Does the general practitioner have time to use such a diagnostic system? For patients it’s only useful if it involves risk factors you can do something about yourself” • “You assume that all Dutch hospitals will implement your findings, provided that the results of the study are positive. However, you’re not anticipating on a situation in which hospitals don’t want to follow your implementation plans.”