Adolescent Sexual and Reproductive Health Data Gaps

Hi @Shashi - maybe you could give physicians one-time QR codes on paper for data collection that they could offer to their patients, so the patient could complete a survey in private or at a friend’s house, and with the data anonymized at the point of entry/response (no names, IP addresses, MAC addresses, etc.), kept confidential (not stored on the response device, encrypted in transit and at the destination), and grouped with enough other responses to avoid de-anonymization via demographics (e.g, there’s only one person of age Y with 4 siblings within 10 miles of Town X). This of course is subject to a couple of “ifs”: whether local laws allow data to be gathered in this way from adolescents; and whether adolescents will enter data honestly or misreport for various reasons such as lack of accountability.

As @DrLiliaGiugni described, one thing we are interested in exploring is smart phone driven technology that uses an incentive platform to allow adolescents to opt in to self-report data on their sexual and reproductive health and participate in surveys. As noted by @stephaniel and @Suneetharani, one significant challenge in this space, across many diverse contexts, are the legal and social barriers around capturing and using adolescents’ data, particularly around sensitive topics and without parental permission. And for those in the 10-14 age range (where the data needs are the greatest).

Some of the experts we spoke with noted that the space of adolescent SRH data collection is actually growing and one of key issues is on the “back end” of data collection. Could the challenge also be around better (or open) access, analysis, usefulness, and harmonization of existing and newly emerging data? I liked @DrLiliaGiugni’s example of models that entrust data collection to charities. Doing so might be a way to ensure data is relevant (and more nuanced) and, ideally, useful.

Hi All, I’m just catching up with the recent discussions. It looks like using technology, especially, mobile health technology to address gender data gaps is emerging as a potential solution across both Adolescent Sexual/Reproductive Health and Global Mental Health. I am particularly in favour of mHealth solutions because mobiles are probably even more important in developing countries. The promise of mHealth solutions is also growing due to the current pandemic. Anyone could be a potential prize winner: a small NGO operating in a rural province of a developing country or a large government or corporate programme operating in a developed country. Different countries and settings have different priorities and so it is difficult to choose between Adolescent Sexual/Reproductive Health, Global Mental Health, or any other important topic. So, as a potential prize direction, it might be a good idea to look at mHealth solutions addressing gender data gaps in general.

Thanks @pavel for sharing your thoughts. I agree mobile health technology is a way forward. Nevertheless a question that arises in my mind, can mhealth capture local experiences of distress while also building global mental health data needs? let me know what you think.

Thank you @Shashi – I think that’s the promise of mHealth so challenging people with a prize to show how it’s successfully done in practice is a potentially good idea. The challenge is not so much technological, but getting regulatory and ethics approval, but also “phenotyping”, i.e. if all sorts of reported physical and/or behavioural characteristics and traits are based on self-reporting, which varies between individuals and settings, then big data is meaningless. The latter is a grand challenge of all big data, which is yet to fulfil its big promise.

Thanks @Pavel.

Hi @malikammar12345, @KarenBett, @ctzanakou and @acutean,
As all of you have a background in research and policy, you might have some thoughts on Pavel’s comment. Please share your thoughts.

@Pavel - I think this is a good approach, set the prize on a solution (mhealth) and the problem (health gender data) can be divided in different ways: SRH, mental health, GBV- its a long list). As Pavel says, the problem is often not the technology, but the governance/leadership and legal barriers. Most countries are now adopting digital health through DHIS and all, and some have SRH components- but you find often the data collection is neither timely, accurate or easy due to paper based formats. This challenge can try to bring mHealth (eHealth) solutions to a) strengthen what governments are already collecting b) work with Non-state actors to collect data with more nuances than official data collection c) link the data generated to other systems i.e. make it interoperable with other data sources so that it becomes truly meaningful

Many thanks to @Pavel and @KarenBett here. Your thoughts reinforce what we have been reading and hearing from other experts. One expert questioned our desire for more adolescent data and said more could be accomplished by working on the “back end” of data collection. Similar to what Pavel said, the existing and newly emerging data needs to be made meaningful. Also, we hear you on the legal issues. Others we spoke with similarly agree how the legal, social, and age barriers (particularly around obtaining needed data for 10-14 year olds) are perhaps the biggest issue in adolescent health data collection.

I also like the idea of focusing less on a health domain or diagnosis and more on a tool like mHealth, where advances could be applied and scaled up to other areas. This has popped into some of our discussions and I’ll continue to bring it up. Thinking this way shifts the conversation and the way we can think about impact.

@Pavel, or anyone else, do you know of any good examples, or have any suggestions around, mHealth applications for mental health in low income settings and with SMS only phones? I am familiar with how SMS phones are useful for infant and maternal health. I am wondering if we can push the technology envelope here for mental health.

Finally, thanks @pavel for noting that an mHealth challenge opens up the prize space for small NGOs and others. I think this is important for us to think about. Core to my thinking involves enabling smaller groups from the global south to address these challenges, rather than reinforcing the “West and the rest” structures.

Thank you @Aaron_Denham for your reflections. I am afraid, I don’t know any good examples off the top of my head, so I tried to look up. This review does show the growing use of mhealth in LMICs and there is one study with SMS only phones Telemental Health in Low- and Middle-Income Countries: A Systematic Review

Thanks @Pavel for sharing this resource. Very interesting.
If you know which data sources can be used to better understand the mental health of a population? You could share this details here: EHR & Social Media Data for Insights in Mental Health — XPRIZE Community Thanks.

Apologies @Shashi, I don’t know much about social media. Coming back to mHealth, there is a useful review showing that the overall evidence base on the effect of mHealth interventions on gender relations is weak Influence of mhealth interventions on gender relations in developing countries: a systematic literature review | International Journal for Equity in Health | Full Text

Catching up on this discussion! For more information on digital health and it’s effectiveness, 3ie has released the draft version of their evaluation of digital health interventions (note this does not have a gender angle): https://gapmaps.3ieimpact.org/evidence-maps/digital-health-interventions-dhi-draft-version

A key element that has come up various times in our work and a study we conducted to understand adolescents’ use of digital platforms to access SRHR information, is the meaningful inclusion of young people in identifying the challenges and developing the solutions to the issues that affect them. Even in scenarios where legal and social barriers are addressed, young people may actively choose to not use digital interventions because it doesn’t actually address their needs or is not presented in a format they find valuable, etc. Any prize developed around adolescents’ needs should involve adolescents from the start, even in setting the direction of the prize such as in this discussion.

Finally, as mentioned in another thread. The idea of focusing a prize on mHealth is great and has much potential. However, it would be of benefit to narrow it back down to focus on mHealth for a “gender gap” issue to not loose the gender angle. It must take into consideration that different populations (such as girls and women) have less access to digital technologies and lower levels of digital literacy. The potential of mHealth may fall short if it doesn’t first address the key gender gap in tech.

Thanks @pavel and @WD_Research for sharing the resources on mhealth and digital health and also for sharing your experience on usage of digital platforms. Great learning from your experiences.