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Ethics using WhatsApp in Health Research

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Browsing: Ethics using WhatsApp in Health Research


Anonymous

posted

My aim is include a Social Networking component in an intervention which aims to promote physical activity in older patients. My thoughts are to connect patients by using WhatsApp (probably the most accessible/acceptable instant messaging platform at the moment). However, issues surrounding confidentiality and privacy surround WhatsApp, as patients will be able to see other peoples phone numbers etc. My thoughts were that this is fine, as long as this is clear when collecting informed consent. Have other people dealt with issues similar to this?

Thanks

Rubi Linares-Orozco

Posts: 34
posted

As with any commercial application being used in research it is important that you seperate what is the research study and the risks associated from the research procedures from privacy risks that may present themselves from using the commercial application, especially in cases where the participant will be usinging their personal devices, as a part of the participation in the study.

Because "WhatsApp" is a commercially owned product and it appears you plan to use it as a tool for communicating and contacting participants the researcher should understand its capabilities and limitations in regards to privacy and security, as this is something the IRB will be asking for more information on. Make sure you review the "WhatsApp" privacy policy https://www.whatsapp.com/legal/#privacy-policy-information-we-collect and consider how the research participants will be using this app during their participation in the research.

Researchers cannot alter the way the commercial application functions (just like an over the counter medication). You can only educate and inform participants on how the application will be used, or implemented as part of their participation in a study, and the safeguards built into the application that will facilitate the privacy and confidentiality risk aspects thatsubjects and IRB's will be concerned about. Worth noting is that subjects may already be using this app for there everyday social needs, so how will being in this research study differ from those everyday uses (additional risks?).

These are some of the considerations that I would look for to be addressed in your research application:

1) Does the participant need a "smart phone" (or a certain type of device) in order to participate in this study, if No, what are the alternatives?
2) Does the participant need to download the "whatsapp" application in order to participate in this study, if No, what are the alternatives?

3) Does the participants device have the available memory (GB space) to allow for the proper functionality of the application?
4) Does the device need to have WiFi connection or Cellular Data in order to properly function?
* This also raises a cost consideration, what happens if the participant cannot afford a cellular data plan and communication to participant is frequent, will the study provide compensation to cover the costs of a data plan.
5) How will the researcher inform participants on setting up their profile and appropriate privacy and security steps to minimize potential breach/ loss of confidentiality?
* This is where the education from the researcher is key, and how will this education be communicated to the participant (i.e. seperate hand out, youtube video, in-person). If the participant chooses to end participation in the study, how do they go about dis-enrolling or deleting the application from their phone, etc.
6) Inform the participant that upon downloading the application they will be asked to agree to the commercial applications user agreement seperately (different agreement from signing an ICF) and how the "WhatsApp" application chooses to use their data and information is outside of the research, and outside of the control of the researcher.
* IRB's and Lawyers will tend to disagree on this issue, so again education for the participant and understanding of the applications capabilities is important.

Good luck with your research, and feel free to contact me if you want to discuss this scenario further.

Anonymous

posted

Interesting question - thanks for posting and for the response/guidance.

Hayley Robinson

Posts: 3
posted in reply to rubi linares-orozco

Hi Rubi,

Thank you for your reply. You have raised important and interesting points. I would be keen to discuss my approach to the considerations you have mentioned and would be interested to hear your thoughts surrounding the training of the patients and moderators for the WhatsApp group, as well as the guidelines provided for health care professionals to educate patients on the content of the intervention.

Thank you,

Hayley