Global Mental Health Gender Data Gap

Aaron_Denham

We identified the global mental health gender data gap as one of several possible prize directions.

Arthur Kleinman described how the lack of attention paid to global mental health is a “failure of humanity.” Mental health conditions are heavily stigmatized and neglected. We need data to better inform health promotion, treatment, and advocacy services. One significant data gap involves understanding and accounting for the role of gender and culture in mental health experience and epidemiology.

While numerous pathways are needed to transform global mental health issues, what current or future technologies might help us address the global mental health gender data gap?

Shashi

Hi @boblf029, @Suneetharani, @erickson, @shihei, @kalorenz and @bwilcher,
Given your experience, you may like to share your thoughts on this discussion.
Thanks.

Shashi

Hello @sarahb, @Andrea, @KarenBett, @stellunak, @munnatic and @Rabin,
Can technology address global mental health gender data gap? - let us know what you think.

Suneetharani

Hello colleagues, glad to know that you have identified the global mental health gender data gap as one of several possible prize directions. Stigmatising and neglecting mental health are two extreme reactions. Stigmatising can ostracise people with issues of mental health while neglecting can ruthlessly drive them towards suffering and self-destruction. Insensitivity towards such people can aggravate the complexity of the issue. I would like to focus on the construction of mental health especially that of women. Let alone family and neighbourhood, even the doctors tend to dismiss the complaints or label the people with such complaints.
1. As we have discussed earlier, different contexts might have different understandings of health, ill-health and mental health. It might help to survey these in order to comprehend the diversity and the depth of such situations. Such surveys could help us bridge the gap between experience and "scientific knowledge" and break the homogenised understanding of mental health.
2. Feminist thought, like many other identity movements, has made us sensitive to the use of language and the politics of language. It might help to study the language that is used by different agencies, such as family, doctors, teachers, media etc, to refer to issues related to health and mental health and its influence on people who are affected as well as those who are associated with them in different capacities.
3. Most importantly, who decides what is health and what is not? What yardsticks and measurements are used and who prescribes them? What are the agencies that influence the health and ill-health of the individuals and the communities? How do the different forms of discrimination and prejudice design the format of health and otherwise? For instance, the stereotypical images of women and the marginalised communities, particularly the transgender people.

stephaniel

@Shashi I saw your email so have visited this page. This is not my area of expertise, but I wonder if mental health data is especially difficult to collect because of not only stigma, but also shifting definitions of what is "healthy and normal" across the decades and across cultures, as @Suneetharani said. Some mental health conditions may have been undiagnosed/under-diagnosed until recent history, and it's possible (though not certain) they now may be over-diagnosed. Coupled with that, the technology revolution of the past two decades has caused upheaval in the way we interact with the world, with some studies showing large increases in prevalence of anxiety, especially among women and girls, and purporting to tie this to the rise of technology. (Examples:
https://journals.sagepub.com/doi/abs/10.1177/0706743719885486?journalCode=cpab

https://www.theguardian.com/society/2019/jan/04/depression-in-girls-linked-to-higher-use-of-social-media)

Therefore, I think a good survey or data collection effort would include questions about how women and girls perceive and use technology, including but not limited to social media, and how they perceive and engage with other aspects of the world too. I doubt social media is entirely to blame for the reported increase in anxiety. Maybe there are other factors related to changes in school, working conditions, relationship structures, financial pressures, parenting styles, etc., which all could be affecting mental health.

Shashi

Thanks @Suneetharani for raising those intriguing questions. We definitely need to deep-dive into this issue. Have you come across any organizations/institutions who has been working on these issues.

@stephaniel - Thank you for sharing your thoughts. I agree on the your point of Increase in prevalence of anxiety and depression among youngsters due to increase usage of social media. Is there a way that we start using social media to our advantage and leverage it to help us build population-level mental health monitoring and recording of data?

Shashi

@DNAtimes, @Majdbeltaji, @ÅsaEkvall, @panderekha, @Meg, @acutean - it would be nice to hear what you think on this discussion and the comments. Thanks.

Aaron_Denham

@Suneetharani and @stephaniel you touched on multiple important areas we are currently thinking about. Thanks for your comments! I'll share a broad reply detailing some of our thoughts and their overlap with what you shared.

One challenge is how culture and definitions of mental wellness and distress change across cultures and time. Indeed, these things are not static or universal. We imagine a part of this data collection process to be "real time" and any tools and surveys be designed from the bottom up and be culturally specific, rather than working from a top down approach (such as using the DSM only). A challenge will be in moving from local idioms or cultural concepts of distress (for example: "thinking too much," somatic pains, a peppery head, malaise of the heart, etc.) to internationally used classifications that inform global indicators. There is a demand for globally comparable data. But at the same time, we need to question if what we are observing are really the same as the Western category it could get lumped into. There are some engaging arguments here (that are maybe the subject of another post).

Some researchers over the past few decades have been hopeful about how it's possible to understand gender and culturally specific expressions of distress in terms of broader Western categories--mood disorders, psychoses, trauma, for instance. At the same time, they caution against simply treating culture and gender differences as flavoring on an underlying process that is the same for all humans. Gender and culture are not flavorings, they are core to the experience of distress (Janis Jenkins work makes this point).

Regardless of how international bodies want to classify forms of distress, the imperative should be that any services be designed locally and, ideally, address stigmas.

How can we improve the global mental health data needs without completely transforming or erasing local concepts of distress in the process? Maybe one set of data is reported to international bodies while local communities and policy makers continue to work within their specific cultural concepts of distress. Any thoughts or ideas?

Shashi

@AlexandraW, @CrazyMike2500, @Aria, @r78620_20, @Maryam and @Caitlin - please share your thoughts on mental health data gaps and how technology can help address it. join the discussion

stephaniel

Hi @Aaron_Denham - thanks for sharing these thought processes that are under discussion. I like the idea of maintaining two parallel data sets to preserve local concepts of distress and also report to international bodies consistently.

I'd add that researchers, when gathering data, could include some metric related to the background context. For example, if one woman is anxious because she's food-insecure and is subject to domestic abuse or wartime uncertainties, and a second woman is anxious while her major life circumstances (food, shelter, income, life safety) are secure, they may display the same symptoms, but do they both have anxiety disorder? The first woman's anxiety could be a normal response to a difficult or potentially life-threatening situation; the second woman's anxiety is much more likely to be an anxiety disorder. Does the anxiety dissipate whenever the context changes for the better, or is the anxiety experienced more consistently and out of proportion to the stimulus?

Aaron_Denham

Thanks @stephaniel. That's an important point (I'm adding it to my notes). I agree. Focusing on the roots and context of people's distress should be a key lens we take. I like this example because it really hits on the issue of medicalizing larger social problems and structural violence like poverty and food insecurity. It demonstrates the danger of data that encourages reductionistic approaches to complex problems. I'm reminded of a case I read years ago about poor women in N.E. Brazil being given anti-anxiety medication to treat their hunger (I think it was Nancy Scheper-Hughes work). One of our priorities is that data be intersectional and focused people's social determinants. Your example and question gives us a good case to think with, and challenge to include, in any prize design.

Aria

I would say that the more severe a mental health issue is (e.g. severe depression, psychosis etc.), the more likely it'll be easily diagnosed with the help of ICD/DSM-criteria across genders and cultures.

The less severe a mental health issue is, the more difficult a diagnosis becomes, especially with regards to cultural differences.

You're dealing with a mental health issue when your symptoms interfere with everyday tasks such as going to work, taking care of basic needs etc. - such criteria work for all groups of people. Specific symptoms, however, may vary across genders, cultures, personalities etc.

Actually, some types of mental disorders may be more similar across different groups of people, while other mental disorders such as depression, anxiety etc. may be expressed in much more diverse ways. I'm actually really curious to find out about all this!

ukarvind

atleast 3 technological solutions come to mind (many others exist): (1) wearables/phone-apps, appropriately calibrated to assess episodes of potentially concerning behaviors, (ii) AI chatbots (in multiple local languages, not just English) to identify concerning behaviors, counsel the person, as well as to educate (in the vernacular) , or connect the person with a appropriate resource (like a counselor), (iii) gaming technologies. Each of these platforms can be used for assessment, triage, counseling and potentially intervention (to an extent). However, the primary challenge is not that these paradigms don't exist, but that they cater predominantly to english-speaking, racially-restricted subpopulations. Gender data gaps in healthcare (as also mental health) vary a lot across across racial, ethnic, language, and socio-economic-strata. We need to pay more heed to fixing these disparities in detection, screening and intervention. An added "delivery" challenge is ensuring "Techquity" (a word i learned in the AHA annual meeting last year), i.e equity in technological access across these various income, social, education, racial and language-strata. It might very well be that certain strata respond better/differently to a mode of technology delivery compared to some other. This needs to be factored into our thinking as well.

Suneetharani

Hello @Aaron_Denham, one idea could be to include the local "expert" in data collection. There could be different levels of data collection and analysis, for instance, local and global. But, what I suggest is an integration of researchers from the local and global contexts, and mutual learning. One can understand and compare the diversity of culture but only an insider will be able to articulate and interpret the intricate details of it. For instance, "the madwoman in the attic" can be studied and identified, but only women from that attic will be able to analyse the reasons and patterns of normalising the abnormal and abnormalising the normal. The subtle forms of physical and psychological violence can be identified only by those who are steeped in that context. Also, their terminology can go on to become the global terminology to accurately discuss the point.

Suneetharani

HI @Shashi, Critical Disability Studies might help in conceptualising some of these ideas. I know of some organisations that are working in this are but they all have limitations. Individuals have been extensively working in this area and writing. I would suggest a collection of short stories based on life stories titled The Rock That Was Not. These are stories written in Telugu by Githanjali. I have translated them into English. It is published by Ratna Books. The stories touch upon very crucial points related to gender and sexuality.

Shashi

Thanks @Aria and @Suneetharani for sharing your thoughts on this important discussion. Suneetha, I have taken a note of the resource you mentioned and would definitely go through it.

stephaniel

Thanks, @Aaron_Denham, I'm glad this input was useful and gave you a good case to include. Also thanks for sharing the information about Nancy Scheper-Hughes' work - sobering and important.

Shashi

Thanks @ukarvind your thoughts. All strong points. How do you think we can preserve capturing local experiences of distress while also building global data needs? Share your thoughts here: https://community.xprize.org/discussion/758/translating-local-concepts-of-distress

KarenBett

i am just thinking of another data gap which is at the intersection of mental health and gender data- which is GBV. If we can innovate a solution to capture GBV, we will help to address (and capture data) on mental health. I know I am throwing another layer to the conversation but in this present time of covid19 i am also realizing governments and institutions dont have enough systems to capture this data and provide support in order to address mental health

Shashi

Hi @Niki, @Cristina, @munnatic, @Kalpana and @asneves,
As all of you''ll have a background in GBV, let us know if you agree with Karen's comment above and if possible share your experience on ways of capturing this data. Thanks.

Aaron_Denham

@KarenBett Thanks for mentioning this. GBV seems to intersect with nearly every prize direction we are thinking through. It would be interesting have a separate prize that focuses on this, however, I think it could (or perhaps should) also be included or a part of any direction we go in some form. Adding the COVID lens to it heightens the importance of this domain.

DrLiliaGiugni

Hi all, and @Shashi, thanks for your email! I completely agree with @KarenBett : the intersections between GBV and the gendered side of mental health are plentiful, and there are heavy implications in terms of data collection and analysis. To begin with, research shows that many trauma-related mental health issues (see various symptoms related to complex PTSD) manifest themselves with greater clarity when GBV survivors start processing their own trauma, i.e. when they begin to recognise what they experienced as violence. At the same time, GBV survivors (like other populations with a history of trauma) may feel triggered when involved in data collection efforts that bring them to re-visit their experience without being able to access any forms of therapeutic/social support. Feminist research methodology offers helpful guidelines on this.

Generally speaking, I think getting national/local GBV experts and practitioners involved in the most practical aspects of research design can substantially help mitigate risks of re-traumatisation. That applies to both qualitative research (where there is the chance to create a supportive space for research participants) and quant studies. In the case of questionnaires for big data research (which I agree are of great importance here), the best option is generally to design large, broad and accessible questionnaires. There, potentially 'triggering' questions can be not only carefully phrased, but also combined with 'neutral' questions on related areas of life, so that the research participant's overall experience is less traumatic, and the quality and richness of the data may improve. I hope this helps!

Shashi

Thanks @DrLiliaGiugni for sharing your thoughts.

@VictorOrozco1, @staceyo, @Rabin and @shruti - Would love to hear your perspective on Karen and Dr. Lilia's comment based on your experience with GBV. Thanks.

shruti

i do agree with @DrLiliaGiugni. Using gbv expert & organizations that work with survivors into the process will allow greater insights into the data collection method. Also assuring survivors that they can submit their data anonymously helps and being transparent about how and where the data will be used. Extremely long survey are challenging to collect data unless you do that through smaller focus groups.

panderekha

Currently, we three ( Dr. Padmaja from the Centre for Health Psychology , Dr. Anupama( Medical Doctor from Health Centre and Myself) are involved in a Project on Women Health and Aging: A framework for action and Policy formulations. We had stated collecting our data from January in the four states of India, Uttar Pradesh and Uttrakhand in the North and Andhra Pradesh and Telanagana in the South. Unfortunately, the data collection work had to stop due to the pandemic. We were collecting data on two situations, women living in Institutions like Old age Homes and Women living in the families. We found that the problem becomes more compounded if the woman is living alone with out a family. Functional independence is an important indicator of health and quality of life in old age, since it allows the elderly to perform, independently and autonomously, the activities related to self-care and to a participative life in the community.

We felt that the older women are particularly vulnerable to COVID-19 given their limited information sources, weaker immune systems, and the higher COVID-19 mortality rate found in the older population.

Hence, my colleagues statred a help line to assist these women and they have been talking to a large number of women on phone. Some interesting insights have emerged from these discussions. When livelihood is a burden for themselves, many economically under privileged families find the older people at home an added burden. Older people being more risk prone and having to give greater protection to them intensifies the worries of several families irrespective of economic status. On the otherhand, being identified as more vulnerable to COVID-19, and to be told that they are very vulnerable, can be extremely frightening for the elderly as well. The psychological impact for older population thus includes anxiety and feeling stressed or angry. During these phone conversations some of the aspects that came to lime light were related to mental health.

We will analyse this data systematically, later on but during the phone conversations some of the psycho-social aspects in family and relationships are worth exploring in the background of the suffering of elderly. Many stated that some aspects of family life and relationships affect elderly health. One sided or mutual communication with family members, sense of isolation, availability of food, medicines and facilities were other issues. Interpersonal conflicts and arguments at home during current times as compared to earlier were regular stream of life and the elderly went through verbal & non verbal communication of ridicule, humiliation . More than that many of these women just wanted to speak for hours and felt very comforted by the fact that some one is listning to them.

Shashi

Thanks @shruti for sharing your perspective. We have noted the details.

@panderekha - Thanks for sharing your project details. Great work. Do 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