Closing gaps in which of the following focus areas will have the greatest positive impact?

Karan

We have identified a preliminary set of focus areas that we are interested in learning more about and considering as one of several potential prize directions. This poll ends at the end of business hours on Wednesday, April 22.

Shashi

@adanvers, @Hanadibader, @BarbaraDM, @shihei, @Andrea, @selindilli, @erickson - please vote on the above prize focus areas you feel will have significant impact globally and the let us know the reason behind your selection. Thanks.

Andrea

I selected improved gender participation in clinical trials because women's participation in clinical is vital to developing a more accurate evidence base to support decision making in global health, where sex-specific data is absent.

Kathleen_Hamrick

@Andrea thank you for your vote and comments — we agree, this information is paramount in supporting global health.

The FDA developed evaluation of gender differences in clinical investigations in 1993, and updated these in 1998.
https://www.fda.gov/regulatory-information/search-fda-guidance-documents/evaluation-gender-differences-clinical-investigations.

However, it is unclear what harm is still being done on historically approved drugs that are on the market, pre-development of these guidelines. We would love to hear your thoughts on this.

Shashi

Hi @sadiew, @DrLiliaGiugni, @Cristina, @DNAtimes, @LewisDean, @WD_Research and @aakanksha_k,
As most of you are either researcher or health professional, we would love to know which prize focus areas you feel will have significant impact globally and the reason behind your selection. Please vote and join the discussion. Thanks.

stellunak

Global health and SDG data harmonization, automation, and use is encompassing all of the above, so I think should be a priority.

Shashi

@stellunak thank you for voting and comment.
@AlexandraW, @sarahb, @Kalpana, @gwarnes, @CTresearcher and @NatashaEO - Please vote for the prize focus area you feel is very important to address as it will have maximum impact globally. if possible let us know the reason of your choice. Thanks.

Kalpana

I feel the SDG harmonisation is important as all countries are committed to report on those and robust data and data collection methods are needed

sarahb

Now is a good time to improve data collection and analysis in alignment with the SDGs; this will help funders and agencies align their efforts worldwide, and provide an opportunity to inform the global vision for 2045.

Shashi

Thanks @sarahb for voting.
Hi @aylin, @Esther_Colwell, @lagoble, @pms, @Niki and @ingmarweber,
We would love to know which prize focus areas you feel will have significant impact globally. Please vote and join the discussion. Thanks.

boblf029

Mental health is a neglected topic generally in the United States. We stigmatize people with emotional diseases to a far greater extent than we do those with physical ailments without an emotional illness component. The stigmatizing is done throughout our society, including medical care. Illnesses that physicians have trouble diagnosing they often dismiss as mental illness, or they say you are making it up, you have some kind of emotional problem such as hysteria that is causing these symptoms etc. Before we can treat mental illness, we need to properly diagnose it. Confusing physical illnesses that have mental illness symptoms such as anxiety, depression etc. both exaggerates the problem and makes it harder to treat. People who genuinely have mental illness know that society looks down on them and are fearful of seeking treatment although great advances have been made in the proper treatment of mental illness including chemotherapy far better than when my mother was treated thirty years ago and vastly improved electro-convulsive therapies
Under diagnosed or over diagnosed mental illness not only is a serious problem for the patients but it is also a huge problem for the economy.. Mental illness reduces productivity of the employees, participation in the economy, etc. It is an economic problem of tremendous proportions and an enlightened approach to managing these cases would be a significant benefit to economic development not only in the United States but in other advanced as well as developing nations.

Adolescent health, including mental health, is a neglected area as well. I found that social work agencies that love dealing with child abuse of infants shy from dealing with adolescents. Abused infants do grow up and if we have no proper social services for them all we have gained by preventing their abuse in infancy is lost before they have had full lives. That makes no sense. But in the United States we neglect adolescents except fitfully. We ignore the fact that they do not have fully mature minds yet we leave decisions about their post secondary education largely up to them without guidance especially in the less affluent neighborhoods of this country. Decisions about post secondary education are life altering decisions and getting it wrong can blight their lives Adolescent health problems suggest that mental illness is a big problem because such problems as suicide, drug abuse, alcoholism, accidents seem very common among this age group.

Karan

@boblf029 Thank you for your thoughtful response! Strong points in general. I think your comment brings up the interesting overlap of mental illness between domains. I'm curious about the insight we would gain from filling gender data gaps related to adolescents and mental health. Perhaps this data could inform us about mental health issues' influence in adolescence as well as after adolescence

boblf029

I have no doubt that getting better data ab out adolescents would move the United States toward a more dynamic economy and healthier society. First, you would not get these data without planning some programs that address the needs of adolescents. they are ignored by parents, schools, etc. And it is easy to see why. They are rebellious, often unpleasant, and it is simply easier to leave them alone than to try to figure out what they are troubled by. I am sure I am right about this because as a teenager I was that way. And I think that to a great extent many other American kids are not very likable either. But for those of us who get through that difficult time when our hormones are raging, our self image is changing, our role in the family and elsewhere is changing and critical decisions need to be made and we often have no guide posts if we somehow land on our feet we work out okay. And others i regret to say, some of them brighter than I, somehow never emerge whole from that period of their lives and it hobbles them forever if in fact they survive.

Suneetharani

I have selected culturally sensitive data for global mental health for voting. All the options given above are important, no doubt about it. However, cultural differences and intricacies is a highly neglected area also because of the restrictions and stigma associated with these fields.
1. Violent and aggressive gender relations are steeped in cultural beliefs and practices. Any discussion about these beliefs and practices are considered to be objectionable since such discussions can lead to a disturbance in the sensitive emotitons of the people concerned. For instance, witch hunting and mass hysteria that quite often surface in different regions and in different communities.
2. Not paying attention to the cultural specificities will only provide incomplete data thus leaving a large chunk of information unexplored and unanalysed. Larger conclusions cannot be drawn based on limited samples or respondents.
3. Mental health issues are mostly hidden, repressed or discussed as possession in a multi-dimesnional society like India. Communities refuse to share the informaiton and individuals are afraid of sharing the details. Hence, the need to focus on this highly sensitive area to understand several unexplored dimensions of mental health.
4. Global mental health is a very powerful term, indeed. But, one wonders if adequate number of tools of research are available to collect and interpret the patterns of health, physical as well as mental.
5. On the other hand, it is the most important point to learn about the cultural sensitivities which will educate people about other knowledge systems. This might break the prejudice and bias towards other cultures and enhance mutual respect.
6. Similarly, such studies will be able to enhance mutual respect among different genders.

Shashi

Well said @boblf029 and @Suneetharani - Thank you for sharing your perspective on mental health issues globally. All good points.

@saraheckhoff, @sarahkhenry, @mustafanaseem, @Chakra, @sutapasanyal and @azmatshahi - Lots of interesting comments on the focus area to be chosen. We would love to hear what you think!

YaelNevo

I voted for Global health and SDG data harmonization, automation, and use - not an easy choice as all of the options are extremely important and I completely agree with some of the comments here on the stigma and lack of action around mental health, which is a gendered issue on various overarching levels.
My choice of the SDG's is because of it's global scope and it's ability to shine a light on the gendered dimension of wider issues such as poverty, conflicts, labor market, environmental sustainability, etc.
Global divisions are created, amongst other things, as a result of gendered political and economic approaches, based on hegemonic hyper-masculinity and protector masculinity driving aggressive competition and militarized solutions.
In order to bring about gender equality, we must reveal the impacts of our decision making on a global scale and the interconnectedness of our SDGs challenges.

boblf029

@YaelNevo by singling out hypermasculinity puts her finger on one dysfunctional behavior of males but I think it is important to say this is especially common in Amercan families with an absent father. The absent father does not have to be a father who deserted the family. It can be like my brother a fellow who needed to take a job hundreds of miles away from his wife and children for a couple of years. His son became very attached to an uncle who was his soccer coach and acted like a military drill sergeant gone nuts. But that was the role model the youngster had at a critical time in his life and I think it left him permanently scarred because deep down he is a sensitive and caring fellow but not always able to show it. In my own case I was much younger than my college classmates and I frankly think the women students thought I was a stupid kid like their kid brothers which I deeply resented but didn't know how to deal with . It took me many years to overcome that sense I was socially incompetent and not very likable.

Shashi

Thank you @boblf029 and @YaelNevo for your vote and comments.

@MaikaSondarjee, @BrendaMurphy, @CrazyMike2500, @stephaniel, @dappel and @jennifercurtin - It would be great to have your vote on the focus area and would love to hear your thoughts on the importance of various focus area over the other. Thanks.

stephaniel

@Shashi thanks for reaching out - I voted for increasing equality of gender representation in clinical trials globally, from animal studies all the way through to randomized, double-blinded placebo-controlled human trials, since leaving females out of trials (at any stage) or having them underrepresented can have impacts potentially for decades as a medicine is prescribed over its lifetime.

A difficult but important related question is how to improve the prescribing of existing drugs that were inadequately tested in women, and for which side effects have emerged. What is the best process to disseminate uniform information about these risks and side effects to clinicians worldwide, so they can make better informed decisions on when and whether to prescribe these drugs to women?

Shashi

Thanks @stephaniel for voting and sharing your thought on your selection. All strong points.

@luisbenveniste, @khs40, @ymunoz70, @ukarvind, @Kabita and @bwilcher - please vote and let us know according to you closing gaps in which focus area will have maximum positive impact globally. Hurry! - The poll closes tomorrow.
Thanks.

sadiew

@stephaniel @Kathleen_Hamrick I have not seen gender imbalances that are not reflective of disease incidence in clinical trials in the 10 + years I have worked in this area. Eg in lung cancer trials you always have more men enrollled, but that reflects incidence. Conversely in migraine trials, there are more women who enroll, also reflective of influence.

I think there's an opportunity to expand the mental health topic area to encompass mental health across a women's life and the impact of hormonal changes across that time (adolescence, pregnancy, menopause). This area is understudied and poorly addressed.

I would encourage you to consider including something that closes the data gap on diseases that predominantly affect women: eg migraine, lyme, fibromyalgia, ME/CFS. So little is known about these diseases, and women have historically been told its all in their head, or to tough it out.

Shashi

Thanks @sadiew for voting and sharing your thoughts.

KarenBett

Happy to see that Global health and SDG data harmonization, automation, and use is most voted and I agree. I must mention that this is also quite broad- vertically and horizontally. we would need to identify the gender data gaps across the SDGs that touch on gender and on health (goal 3 and goal 5) and further to the respective indicators. Furthermore we highlight harmonization, automation and use (but should also include data generation- there is still some data that does not exist). Once again, happy to be here and ready to move to next stage

Shashi

Thanks @KarenBett for voting and sharing your thoughts.

We would love to hear what you think of adolescent health data gaps here https://community.xprize.org/discussion/751/adolescent-sexual-and-reproductive-health-data-gaps

Kathleen_Hamrick

@sadiew thank you for your insights here.

sadiew wrote: »

@stephaniel @Kathleen_Hamrick I have not seen gender imbalances that are not reflective of disease incidence in clinical trials in the 10 + years I have worked in this area. Eg in lung cancer trials you always have more men enrollled, but that reflects incidence. Conversely in migraine trials, there are more women who enroll, also reflective of influence.

I think there's an opportunity to expand the mental health topic area to encompass mental health across a women's life and the impact of hormonal changes across that time (adolescence, pregnancy, menopause). This area is understudied and poorly addressed.

I would encourage you to consider including something that closes the data gap on diseases that predominantly affect women: eg migraine, lyme, fibromyalgia, ME/CFS. So little is known about these diseases, and women have historically been told its all in their head, or to tough it out.

I'm curious to know if you are aware of the percentage of drugs that are still marketed today and that which were approved before 1993, before gender was a central part of the drug discovery conversation.