Table 4 Representative quotations
Views on an LHS | Q1 | R13: It is making me happy, the fact that you can merge information from different places to create new knowledge. I get that it is complicated and that you need to think about the methods for analysis and interpretation of results. I think it is a good development, also for the users. In this way, HCPs and women can get unambiguous information. |
Q2 | R18: I think [ConcePTION] is very good, because it is just great for future patients and others to easily find good information. […] Because it can be very frustrating right now. […] There is a lot of contradictory and unreliable information on the internet. | |
Q3 | R4: It is ambitious, because you need to gather a lot of data, you need the right data and the right method for data analysis. Then you also need to interpret results and translate the results into accessible information. Not only in jargon, so that nobody understands the information. | |
Willingness to contribute and engage in an LHS | Q4 | R2: For others, yes. [The LHS] is of little use to me, but [contributing] is more to help others in the future. |
Q5 | R4: I think it is important that [consent] is asked. And that everything is not just lying around all over the place. Especially when it concerns medical data, I don’t think that’s being careful. So, I think this should be handled with care. Certainly. [..] At least consent should be asked [before data is shared] and it should not be just assumed that people consent to sharing data. | |
Q6 | R15: I am doing pregnancy-yoga, there I am in a group with all big baby bellies. And I also find it useful that I hear various tips regarding the pregnancy. I like that. | |
Q7 | R20: I don’t think a lot of people, or pregnant women know that they can contribute to scientific research. If they would know about it, I believe they will contribute. It would help to at least give women information about the possibilities [and about the burdens and benefits of contributing]. | |
The role of the HCP in an LHS | Q8 | R8: It is better to discuss the interpretation [of results] with a GP or gynecologist. Especially on how does this [medicine] influence me and my body? |
Q9 | R3: [regarding medication intake during pregnancy] It depends on the choice you make. That goes for everything in life. You are the one to decide. And if your decision turns out wrong, that mistake is yours not someone else’s. | |
Q10 | R18: Despite the fact that you can suffer from the same condition, everybody is different, every woman is different, and every pregnancy is different. So, what works for one person, does not necessarily work for the other. | |
Trust in an LHS | Q11 | R7: I actually trust that [research] will be conducted in a good and competent way and that my data is being used for scientific research and for improving clinical practice. That would be in line with my own goal, which is nice. So, I do not necessarily need to be informed about every detail of the research process. I don’t think that is problematic. |
Q12 | R13: Once there is this additional goal of making profit, you cannot be objective. Even as a researcher you cannot. The pharmaceutical industry can ask researchers for certain results in exchange for a trip to Haiti. In that situation, you are no longer transparent, honest, and objective. Commercial purposes cloud that. | |
Q13 | R19: It should be promoted by the right people. When I would go to my doctor, for example, my doctor would say to me this is a great website to go to. I go to the midwife and she would say to me this is a great website to go to, etc. I think that’s important. |