Adolescent Sexual and Reproductive Health Data Gaps

Aaron_Denham

Adolescent health is crucial to the success of the Sustainable Development Goals. Information about the sexual and reproductive health of adolescents is vital to support decision-making and develop programs which effectively address their needs. Numerous data and research gaps impede these efforts.

We have identified gender data gaps for adolescent sexual and reproductive health as an area to consider as one of several potential prize directions that we are researching further. Please note that a prize direction has not yet been selected.

We want to know what you think:

• What are the most significant measurement gaps or data needs in this space?
• How might technology be leveraged to better collect needed data from adolescents (broadly defined as ages 10-19)?

Shashi

Hi @DrLiliaGiugni, @shihei, @YaelNevo, @EVSwanson, @erickson, @WD_Research,
We would love to hear your thoughts on this latest discussion topic.

Shashi

@Andrea, @sarahb, @Suneetharani, @panderekha, @adanvers and @sadiew - what do you think on adolescent sexual and reproductive health data gaps?

sarahb

Hi all, this is an area of particular interest for me, however I'm not well-versed in the existing research, data or technology in the space.

By way of context: I feel incredibly privileged to be a women who has been able to decide how many children I have and when. It has allowed me to study, travel, shape my career and then start a family. I have two great kids and I'm in a good financial, emotional and physical state to support them. I have a strong support network. Throughout my life I have had full control over sexual relationships, access to sexual and reproductive health and information to support my decisions.

So my questions would always start with: do we know 'what works' to enable women to have freedom of choice, access to information and services? What does this mean for adolescents? Where are we failing to apply these frameworks and approaches and why?

boblf029

As a sociologist I am data driven. But on the issue of adolescent health I suspect the problem is less what we have needs correcting than that we simply are not looking at certain issues because they are so difficult to study..One of them is discrimination not on gender grounds but on grounds of nonconformity. And sometimes the nonconformist cannot conform. My suspicion, based entirely on my own experience growing up, is that height is an example of an area where some people cannot conform. Adolescents are growing up fast and it shows in their shooting up. Kids I knew who were a couple of inches taller than I when they were ten or eleven wound up being six inches taller or maybe more by the time they were seventeen or eighteen, And one thing I also noticed is that their social life was a hell of a lot better than mine. Girls my age often were taller than I and they sought out boys who were taller than I. Boys taller than I might be friendly with me but not to the point of being willing to go on social outings. I d id not really fit in until I was a graduate student in my early twenties and hung out with other sociology graduate students. But all though my teens I was isolated. And that is a clue to the type of research we need to do. Back in the fifties and maybe the sixties or thereabouts we did gang research in lower income neighborhoods including books like Urban Villagers and Talley's Corner. We need to revive that tradition of research.
we need to see who is part of the different cliques and who is outside of all of the cliques. And we need to find out more about the people who are outside the cliques in high school and college to find out who is more suffering. It may be the girl who is too tall for the boys or feels she is too tall, and maybe because of uneven physical development is somewhat clumsy etc. Or it may be the boy like me who is too short for the girls.. So if you want to fill in the data gaps you need to be looking at the right kinds of of data. And that means we need to revive the tradition of looking at small social groups including sociometric studies of who is in and who is out. And these studies need to be done not only in working class neighborhoods but in middle income and affluent neighborhoods as well.
The problem of social isolates is different in certain communities than in the communities I grew up in. For instance, the haridim, or pious ones in the ultra orthodox Jewish communities or the Amish or the Mormons may be very different in who gets isolated. Instead of a problem of being too tall a girl or too short a boy the isolate is maybe someone who is not interested in the kinds of activities that are expected of adolescents and is ostracized for their unwillingness to conform. Their parents may participate in this ostracism.Among the haridim for example if a child marries outside the fiath they are considered dead. I do mean that literally. the child is mourned but banished. The parents have nothing to do with the child.Can you imagine some headstrong young orthodox woman of sixteen falls for a boy who is not Jewish or sufficiently orthodox and elopes to a state where she can marry at sixteen or seventeen if emancipated? She is forever dead in the eyes of the community from which she came. Not a happy person I am sure.

Shashi

Thanks @sarahb and @boblf029 for sharing your perspective.

@sarahkhenry - As you have experience working in global health with a focus on maternal, newborn and child health, we would love to hear your thoughts on adolescent health data gaps.

@qlong, @ukarvind, @aylin and @lepri - As you all have background in computational medicine and develop statistical and machine learning methods for advancing precision medicine and population health, we feel you all will be atleast able to answer on how technology be leveraged to better collect needed data from adolescents. Please share your thoughts. Thanks.

KarenBett

Just to chime in on this topic. Adolescents in most countries would still be classified as children and therefore may not always direct givers of data, and still under protection including child protection on technology. It is a very delicate balance on what a prize should look like and the prize has to factor this in of course. I think in the end, we might want to ensure the data gaps we close end up strengthening govt systems that collect data (Demographic Health Surveys, Adolescent health surveys etc) see ways and opportunities to make this more real-time and still fits within the SDG indicators as that is the end game. Thanks

boblf029

The general approach I suggest is two pronged: sample surveys and pilot projects. Pilot projects would gather data to adjust the services and prepare the ground for scaling up. For instance, in the United States I advocate high school counseling to teach students going on for post secondary education to be efficient in their studies. But suppose we are dealing with a student who is having problems at home such as the illness of a parent that undermines the child's feelings of security and self worth. The counselor could pick up on that and refer the child for specialized services. This would make the overall counseling intended to maximize success in college studies more effective. And it could help gather data on adolescent health if the referral and mental health exam were to yield appropriate statistics for improving mental health services in the country.
The U.S. Census does sample surveys on selected topics. I am unsure if they are the ones who do crime victimization studies but these sample surveys are valuable tools for gathering necessary data for managing the economy etc. This kind of data collection could be done by the government to generate reliable statistics needed to improve adolescent health. And I suspect in many other countries this two pronged approach with tweaks to address local cultural issues etc. could work as well.
None of this contradicts my call for studies such as Talley's Corner or Street Corner Society by William H. White to be replicated in new communities and different ethnic, religious and other affinity groups. Triangulation of methods yields the best data of all for social science.

Shashi

Thanks @boblf029 for suggesting ways to gather adolescent health data.

@Tsion, @stephaniel, @staceyo, @Sabeeka, @gwarnes and @ssolomon - you all may be able to share some light on this discussion and the comments so far. Thanks.

Kathleen_Hamrick

@KarenBett thank you for joining this conversation and for raising this important point for consideration.

KarenBett wrote: »

Just to chime in on this topic. Adolescents in most countries would still be classified as children and therefore may not always direct givers of data, and still under protection including child protection on technology. It is a very delicate balance on what a prize should look like and the prize has to factor this in of course. I think in the end, we might want to ensure the data gaps we close end up strengthening govt systems that collect data (Demographic Health Surveys, Adolescent health surveys etc) see ways and opportunities to make this more real-time and still fits within the SDG indicators as that is the end game. Thanks

What opportunities or complicating factors do you forsee from various technology pathways, such as social media, in this area as it pertains to gender and adolescent data? One specific interesting use case of social data can be found in Facebook's Disease Prevention Maps: https://dataforgood.fb.com/tools/disease-prevention-maps/.

Shashi

Hi @kbeegle, @Cristina, @clestrie, @Kalpana, @LewisDean, @aakanksha_k and @BrendaMurphy,
What do you think of data needs in adolescent health? join the discussion to share your thoughts. Thanks.

Aaron_Denham

@KarenBett Connecting with and supporting existing data collection systems is at the top of our mind. And ideally getting data closer to real time. Thanks for noting this. One of the significant need groups are young adolescents (10-14), but the privacy and consent issues are indeed tricky here and something we need to dive into further.

Aaron_Denham

@boblf029 You bring up many important points. Thanks for sharing. A central part of our thinking on this topic involves asking how we can connect with “hard to reach” or marginalized adolescents. This, and a more social justice orientation, will be a core part of anything we design. And indeed, pilot projects to gather initial data are central. We envision significant testing of any ideas and platforms with the goal of scaling things up while being attentive to the problems that one-size-fits all approaches have across diverse contexts.

bwilcher

While my research does not focus on adolescents, some potential gaps that come to mind based upon my limited exposure to this area are provided below.
• Missing populations: vulnerable youth (e.g. homeless, refugees), never-married women in Asia and Africa (north and francophone countries), adolescents under 15; young men.
• Other difficult to measure data gaps (perhaps due to fear of stigma?) may include:
o accurate measures of sexual activity including use or ease of access to contraceptives or abortions
o sexual abuse/violation and/or early marriage linked to education/employment data
o health impact of adolescent pregnancy (e.g. maternal mortality/disability)
o long-run reproductive behavior (e.g. multi-pregnancies) linked with socioeconomic outcomes
o reproductive health education or other social norms around reproductive decisions

Others have cited some potential challenges with collecting info on adolescents. Forgive me if this was previously mentioned, perhaps we could:
• add retrospective questions to existing reproductive health surveys of women/men 18+. While this may be subject to recall bias, women/men may feel more empowered to speak on these issues as they age
• collecting info (to the best extent possible) when vulnerable populations intake into social services
• leverage mobile phones, social media, mobile apps (are there existing apps serving adolescent mental/physical health with which you can team up to collect de-identified data, e.g. Bright Sky)

Shashi

Thank you @bwilcher for providing insights on adolescent health.

@JvCabiness, @NicholaBurton, @GB2020, @clausdh -- You may want to share your thought on this discussion.

DrLiliaGiugni

This may sounds trivial, but, as others have pointed out, specific data collection challenges are also dictated by the wide variation in context. There are obviously age-related challenges (unclear differences between children and adolescents across different countries), and populations and categories whose specific difficulties tend to be neglected for various reasons (LGBTQ+ teenagers, migrant and refugee ones, those in juvenile prisons, or without access to schooling/Internet), in some countries more than others. A specific issue that I haven't seen mentioned yet (forgive me if I missed some posts) is menstrual poverty, a huge barrier in girls' access to education, reproductive and sexual health services, and socio-economic opportunities more generally.

The most reliable data I have ever accessed on these issues tend to come from IPPF/Planned Parenthood and its sister organisations, as well as Unesco (but they tend to be more specifically focused on access to sexuality education). They tend to have more depth than other UN agencies' datasets. Moreover, their model of entrusting data collection to local charities and organisations, who have the means to dig deeper into the subjective experiences of adolescents, is an interesting one. A rather exciting development could entail the use of digital technologies (straight forward apps to be accessed directly on smartphones) for both data collection and awareness-raising purposes, in partnership with local organisations that are part of IPPF's networks.

Shashi

Thanks @DrLiliaGiugni for your insightful comment. We will definitely look into IPPF and UNESCO details.

Suneetharani

Hello all, I agree with the points that you have all made. My observations are as follows.
1. There is no proper education for children/adolescents about their bodies and sexuality. The means in which they try to learn about these are quite often misleading.
2. Early marriages and relationships snatch the rights from them as they are still not clued into their sexual and reproductive rights at that point.
3. Not just families but also communities decide the sexual and reproductive status of the adolescents.
4. Either the adolescents are considered children and thus asexual or young adults prone to desire and sexual relationships and hence are controlled to the maximum.
5. Class, profession, family status, housing, siblings, peer group, schooling, neighbourhood, exposure to resources and social media decide the understanding levels of the adolescents.
6. Emotional factors such as self-image, body shaming, insecurities, social status, compulsions from the family also compel them to forego their rights.
7. Ignorance of rights might affect their self-respect drastically and might push them into abusive relationships and unwanted pregnancies. Especially, in a society where the gender of the child and the number of children are decided by patriarchal institutions, choice and well-being of an adolescent are completely repressed. There are instances where women are considered mere child-bearing pouches and younger women, those in teens, are considered to be desirable for child-bearing.
The list can go on like this. What needs to be done to fill the gaps in the related data is our concern.
1. Instead of thrusting the "adult" notions on them, we can derive tools of understanding and analysis from the adolescents.
2. It might be helpful to understand the adolescent notions of the world by conducting interviews, interactions and discussions. Subtle questions could be framed about their understanding of their bodies, desires, models, dreams, aspirations, goals and especially their rights.
3. In a recent survey conducted in a school in Telangana, most girls repeated the patriarchal notions of womanhood and motherhood. It is worthwhile to study how such notions growing along with children and strengthen in their adolescence which is the most crucial period as far as their sexual and reproductive rights are concerned.
4. Social and cultural taboos on intense discussions around the body, including the knowledge about one's own body, are strictly prohibited in a society like India. The language built around the body is also offensive, abusive and highly stigmatised. An attempt to de-stigmatise the language and build a language of respect for the body might be able to elicit the data from the adolescents.

stephaniel

Hi @Shashi - thanks for reaching out. Regarding significant measurement gaps or data needs, I think you'd need to make sure the data gathering meets legal standards and also, from a technology perspective, that privacy and security of the data are sacrosanct. To that point, who should collect the data? An adolescent's pediatrician might not be anonymous enough from the adolescent's perspective (if, for example, the adolescent believes that the pediatrician might share information with their parents), or conversely might be viewed as more trusted than a stranger. Whoever collects the data, they might be required by law to report certain responses to the authorities.

When I was an adolescent, I could imagine little worse than sensitive information about me becoming public or being used against me. To gain trust, anonymity must be assured to the extent possible (including taking measures to avoid de-anonymization of aggregated data), and you still might not get honest answers to questions due to various cultural/family/religious/social pressures. So how questions are phrased will probably be vital.

I liked @bwilcher's suggestion too of including retrospective questions in surveys of young adults age 18+, who might be more likely to provide open and honest answers, especially if they are now living independently.

Shashi

Thanks @Suneetharani and @stephaniel for sharing your thoughts and perspective. All strong points. We agree anonymity is essential in gathering relevant data. We are trying to understand how technology could help us gather the relevant data from adolescents.

stephaniel

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.

Aaron_Denham

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.

Pavel

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.

Shashi

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.

Pavel

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.

Shashi

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.

KarenBett

@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

Aaron_Denham

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.

Pavel

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 https://www.hindawi.com/journals/ijta/2018/9602821/

Shashi

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: https://community.xprize.org/discussion/763/ehr-social-media-data-for-insights-in-mental-health Thanks.

Pavel

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 https://equityhealthj.biomedcentral.com/articles/10.1186/1475-9276-12-85