In this lesson, we're going to discuss some ethical considerations for data collections, to keep in mind as you're preparing your data collector training. We're specifically going to look at the role of the data collector, respect, voluntary participation, informed consent, personal privacy, protection of personal information and response to participant questions. So all of these are types of ethical considerations that you have to keep in mind as you train your data collectors. So starting with the role of the data collector, the interviewer is actually going to be the only person in most cases that the respondents will actually interact with. And because of this, there is something of an ambassador for the study overall. They are the person who is going to be responsible for obtaining consent as well, administering the questionnaire and also for accurately recording all the information that they obtain from respondents. They're also responsible for ensuring that the research plan and all of the others possible study procedures that you've discussed during the training are followed exactly. Respect is an important consideration in terms of collecting data ethically, data collectors have to show respect to the people that they interview, but also to anyone in the community. So as we've just discussed, they are representatives ambassadors of the study overall and in most cases, data collection for your study will happen once. But there will be other data collectors who will come for other studies in the future and generally creating a respectful relationship with the community is in everyone's best interest. In the case that possible interviewee refuses so after being read the consent script, they choose not to participate in the study. It's very important that data collectors not get upset and not get belligerent in any way. Their responsibility is really to remain polite, make sure that the interviewee has understood all that the study entails and that the refusal isn't due to a misunderstanding or poor comprehension of what the study is. And once that is confirmed then data collectors need to stay polite and respectfully retreat essentially. There also needs to be respect within the study team. So there needs to be respect from data collectors to team leaders and team leaders supervisors etc. Going up the hierarchy. But it's also very important that there be respect going down the hierarchy as well, creating a good team spirit, creating positive dynamics in the whole body of people who are participating in this data collecting effort is very important. And respect is a key part of that for everyone involved, to the point of being respectful in case of a refusal. It's very important that data collectors understand that participation must always be voluntary. No one is required to participate in the study at all. And functionally what the data collector is doing is asking a favor from someone, asking them to donate their time to have this conversation. So everyone has the right to learn about the study before they make the decision to be included or not and even beyond the consent process. So if the interviewee agrees to do the study, but part way feels uncomfortable with a particular question or no longer wants to or they have other things to do and they don't have time to complete the interview etc. It's absolutely their right to withdraw. Data collectors need to be mindful that they cannot coerce or appear to coerce interviewees into answering all the questions or completing the interview if the interviewee does not want to. Similarly, data collectors cannot make any false promises or appear to make false promises or misrepresent types of benefits that the interviewees might receive from participating in the study. Informed consent is something that you'll likely want to spend a good amount of time on in your data collector training. It refers to the process of informing the interviewee or the potential interviewee about the study and eventually asking them if they want to join. Part of that is also making sure that the information is well received so that making sure that the interviewee is aware of what is being asked and how it's being asked etc. And has the opportunity to ask any questions or concerns about the study prior to deciding whether or not they want to agree to be interviewed. If the consent is not granted, the data collector needs to record the information in the questionnaire whether it be on paper or electronically and then obviously they must also not proceed to the interview. They must then retreat respectfully and thank the interviewer nonetheless and exit. Depending on how you set up your survey, you may need to include different questionnaires. So for example the child questionnaire, the woman's questionnaire, the man's questionnaire. Each one of those questionnaires will have a consent script that is specific to that questionnaire. And depending on who you're interviewing, you will need to use different consent scripts. Of note if you have already administered informed consent for an individual in the context of this survey, you don't need to enter to administer the consent again If you're using a particular questionnaire. What I mean by that is if you are doing a household questionnaire and a woman questionnaire for a woman who is for example the head of household. You don't need to redo the consent process before moving on to the woman questionnaire with that particular woman, you will have to administer consent for any other woman that you interview in that household. In some cases when literacy rates are low or when the language is not written when it's an oral language, there are different procedures that you can use to obtain consent. One of those is an oral consent form, but you will need to check with both the local Ethics Committee and your own institutional Ethics Committee to make sure that you are remaining compliant with their requirements for consent. You will also need to retain these consent forms depending on the country or on the Ethical Ethics Committees' requirements. You may also need to leave a copy of the consent form in each household, so you need to make sure ahead of time to know how to handle this process. And you also need to have a plan to make sure that the consent forms that you retain are stored safely, securely and privately. If you're using the complete radar questionnaire, you will need different consent, ascent and parental permission forms. All of these are available as part of the radar toolkit. So for the household questionnaire, you'll be looking to speak to the head of household or her, or his representative and there's a consent form for that. If you're administering the women's questionnaire, you'll want to administer consent to all the women 18-49 and same for men except the men's consent form for men 18-49. And in the case that there is a caretaker of a child under the age of five who is not included in another questionnaire. So that means if a woman is also the mother of a child under five, you won't need to re administer this caretaker consent form. However, if the caretaker of an under five, of a child under five doesn't fit Into another category. For example, it's the grandmother who is 55 and who was not included as an eligible woman. In your survey, you would need to administer this consent for the caretaker of a child under five. For adolescents that are under the age of 18. You have some ascent forms where you'll ask the adolescent man or woman if they want to participate and additionally, you will need to get parental permission. So typically actually the order is reversed. You would ask for parental permission to speak with the child and then you would ask the adolescent child if they want to participate in your study because they are under the age of 18, they cannot give consent. This is why we're speaking of ascent, in terms of personal privacy. Parts of the questionnaire, particularly anything having to do with family planning and some of the other women's and sexual reproductive health questions are very sensitive information. So as best as possible, data collectors need to try to find a quiet private area to carry out their interview. The interview means a stranger came to the house and it wants to speak with someone in the house and that might be a little bit of an attraction, particularly children tend to be very excited about this process. So as best as possible, try to find a spot that will allow not to have a crowd of onlookers curiously looking and possibly listening and overhearing some of the information or the conversation that's going on. In some settings however, it might not be appropriate for respondent and interviewers who are of opposite gender to speak in private, for example, an unknown man coming and wanting to speak inside the house with a woman and no one else is present. That might not be appropriate at all. So when you're making decisions about the gender composition of your data collecting team, just be really conscious of the limitations of including or excluding different people based on their genders. It's important to remember that the data collected can be very sensitive and it could potentially be damaging to certain respondents if that data was identifiable and public, that means maybe that it ranges from merely embarrassing to actual potential violence or potential arrests. Some of these questions really are quite sensitive. So it's important to make sure the data collectors understand that there are some serious potential consequences involved with not protecting the personal information of people who entrusted them with their personal information. So it's important to understand that it's really one of their prime responsibilities is protecting that information. For example paper forms need to be safely stored with the research team and as soon as possible transferred to the central office kept locked in a secure area. Any electronics such as tablets and computers must be password protected and closely monitored in terms of where they are and who has them at the moment, who has had access to them etc. There are some applications that allow to wipe the memory of of tablets even when they are not physically with you so remotely, that is a useful thing to investigate. If you think that tablets will be lost, I mean no one thinks ahead of time that tablets will be lost but things do happen in the field and having a contingency plan for when and if that happens might be important ahead of time. So again, to the image of this data collector coming into this community, it's unknown person, there is going to be a little bit of excitement in the community and people might want to learn about this person. Even if the data collector doesn't plan to interview particular community members in that same idea of being respectful to the community. It's important to try and answer questions and to be very courteous to anyone in the community who wants to interact with the person. If the data collector doesn't know the answer, that's fine, they should try to write it down, ask their supervisor, find out the answer to the question and then try to report that information back to whoever asked the question. In some cases, if the data collector knows that they're not coming back to this particular community, it's best to make that clear in terms of not making false promises. It's important that if the data collector promises an answer that they deliver and that they be honest about the fact that they don't know the answer to a question when they don't know the answer to the question. Another important role that the data collectors have is to make sure that the data that they collect has integrity. So it's important that data collectors really gain a respect for the science behind the study in general studies and surveys are not collected without reason. Those study results are going to have repercussions. It's going they're going to be used to determine planning or to determine funding or there's going to be some purpose to the use of these data and so making sure that they are accurate is crucial. During the process of collecting and recording, as well as storing study data data collectors need to stick very closely to the research plan. So make sure that they're really following the research plan as they've learned in their training as is indicated in their manuals and per the guidance of their team leaders. They also should never make up information or make any assumptions about respondents. The whole idea of the whole purpose of actually physically going to interview people is to get information from them. So if they were unable to collect that information, they need to record that in a honest and truthful way, if deviations from the study procedures, occur and sometimes they do and sometimes it's not avoidable. It's very important that data collectors know that they have to report that as soon as possible to their supervisors. Similarly, supervisors at different supervisory levels need to make sure that this information reaches the higher levels of the supervision hierarchy, so that if there is any modifications that need to happen, any contingency measures that need to be put in place that gets communicated as soon as possible. So to sum this up, we have some resources that are available for you to use as references. The Johns Hopkins Bloomberg School of Public Health has an ethics guide that really is targeted for data collectors for them to use during both training and also for them to have as a reference in the field. The link is up on the slide. It's also available in a number of different languages, including Arabic, Bangla, Chinese, Dari, French Khmer, Nepali, Spanish, Swahili as well as Thai. So that sums up the ethical considerations that you want to make sure you keep in mind as you train your data collectors and that you want to keep in mind as you do your data collection.
