Dream Team: Gender Data Gap Team Composition

Aaron_Denham

We are thinking through the specialties and expertise that would make up an ideal team for our gender data for global mental health challenge.

In this challenge, teams will develop novel data gathering methods, techniques, and/or technologies to fill gender data gaps on depression and related cultural concepts of distress in a middle or lower income country in the Global South.

Teams might use digital phenotyping, big data exhaust, innovative surveys, and other emerging methods in digital epidemiology.

If you were to propose a winning team, what skills would you want on your team? Obviously, a team consisting of data scientists or mental health professionals alone would be at a disadvantage.

Who would your dream team consist of?

stellunak

Data scientists, mental health professionals, gender experts, communication specialists, legal/policy experts, research professionals, for a start.

Suneetharani

Grassroots level health workers, teachers and community helpers, who have access to women and families. Researchers with some training in critical thinking will be helpful in developing the tools to collect the data.

boblf029

I love the two comments because they are so contrasting. Personally, I think they are both right but.even before you put together the team you must focus on the project manager. This is an ambitious and enormously complex project. The manager would have to be someone who knows enough about Big Data, and other exotic stuff that he can manage people who are expert in those technologies.of that sort. But hers initial team would have only people more of the sort that Suneetharani wants on her dream team. This is because I follow the advice of statistician John Tukey who pointed out that it is always possible to get precision but you want to start with accuracy. Be roughly accurate and then go for precision. And mental health is a complex term because it is cultural but it has biological elements as well.
As regards grassroots level health workers etc. I think we need to look for what in my field we call barefoot doctors. These could be shamans who have learned some allopathic medicine. They could be natives who trained in Europe in the Freudian tradition and therefore are conversant with some western psychology and also with traditional medicine because they grew up in that culture. They need, in other words to be comfortable in two cultures and that is going to take careful screening and training. That is why a very capable and experienced manager of research projects in the area of mental health both in developing countries and developed countries would be needed.
Initially, I favor studies such as focus interviews with local experts to get a good understanding of how people who exhibit different behaviors are perceived and treated. Is someone who has seizures regarded as a holy person or as an epileptic etc? What is the role of fortune telling? What are the varieties of suicide that are culturally recognized? In other words, we need to see what is really the problem as the society understands it. And only then can we begin to start doing the quantitative studies that I think Aaron is looking for as a final product. This is not a short term study. I think a project like this could last easily five even ten years. But if we get this right it would have enormous value in helping developing nations and improving how developed nations deal with ethnic minorities etc.

Shashi

Thanks @stellunak, @Suneetharani and @boblf029 for sharing inputs on your dream team composition. Great thinking.

@shihei, @ingmarweber, @Pavel, @KarenBett, @sarahb - What would your dream team composition look like?

ingmarweber

The only role I can think of that hasn't been mentioned yet are patient advocacy groups or other representatives of the actual groups who will hopefully benefit.

Shashi

Thanks @ingmarweber for sharing your thoughts.

Hi @stephaniel, @AnnalijnUBC, @WD_Research, @DrLiliaGiugni, @ukarvind - What are thoughts on ideal team composition.

sarahb

Data owners, i.e. people whose data is being collected and used. They will have insights into potential issues with data collection and data quality, appropriate data handling practices, interpretations that can/can't be made based on the data. However the involvement of a few individual data owners should not be misconstrued as 'representation' of the whole population or implied consent from the whole population.

Need also to apply a diversity lens such as representation from indigenous groups, women with a disability, WOC, age groups, LGBTIQ+.

An ethicist.

Shashi

Thanks @sarahb for sharing your thoughts.

Hi @ElsaMarie, @YaelNevo, @Kalpana, @nrasgon, @erickson and @kbeegle - What would be your dream team for this challenge?

Shashi

Hi @staceyo, @Andrea, @EVSwanson, @munnatic, @clestrie - please let us know what would be an ideal team composition for this challenge. Thanks.

munnatic

Keeping frontline workers and building a support network of volunteers helps in mental health intervention. This can help in taking the mental health intervention to lay people. Professional help can be sought at a later stage. Basic identification of people having mental health problems and providing them with a listening ear makes a difference. The capacity of both the frontline workers and volunteers needs to be built for it to be effective. A robust evaluation plan and follow up is what makes it successsful.

Shashi

Thanks @munnatic for sharing your thoughts. We'll definitely take a note of all the points.

mhackett

Not mentioned yet - it is likely that local NGOs, political groups, community leaders etc, while perhaps not directly part of the research team, they will need to be consulted. Also, a local person who understands how to navigate the ethics process in the country. Ethical approval likely to take about a year in many LMIC

Kathleen_Hamrick

@mhackett so true!

mhackett wrote: »

Not mentioned yet - it is likely that local NGOs, political groups, community leaders etc, while perhaps not directly part of the research team, they will need to be consulted. Also, a local person who understands how to navigate the ethics process in the country. Ethical approval likely to take about a year in many LMIC

Are you able to expound a bit more on the extended ethical approval duration in LMIC?

mhackett

@Kathleen_Hamrick - The ethics process can be very different in each country. For example when conducting multi-centre health research in India it takes at least a year. There is not one committee that reviews one application, you respond and that response is considered. The reviews filter in over months and often you have replied to an early review and addressed concerns and then another review will be sent - but of your original submission. Each region/State likely also has there own committee, as often have each institution - so you need to ensure you allow sufficient time for a team to get all the levels of approval required: Federal, state, institutional and community.

In addition, many countries have laws to prevent money laundering. This means there are long and involved legal processes around how money for research is moved (say $ sent to a lead researcher in a High Income Country who is going to conduct research in a LMIC). The HIC researcher may be prevented from sending money to an institution in a LMIC to employ staff. So you, as funders, will need to ensure you have the capacity to provide funds to people so they can use them in line with the laws of participating countries. This may mean funds for the one grant is dispersed to multiple entities.

Shashi

Thanks @mhackett for providing insights into ethical approval process in LMIC.

stephaniel

Hi @Shashi thank you for reaching out. I agree with many of the responses already posted, especially the suggestion from @boblf029 about including a traditional medicine specialist in mental health (aka barefoot doctors) and from @sarahb about including patients themselves and an ethicist.

My overall dream team would include project leader, data scientists, mental health professionals, social workers in particular (rather than just psychiatrists or psychologists) - and not just from the Western tradition, traditional medicine specialists in mental health, gender policy experts from the local sphere and the global sphere, lawyers and a well-versed accountant, two ethicists, grassroots community activists who have a history of supporting women in their local context, patients themselves, a journalist/storyteller/speechwriter to pull all the threads together coherently, and very importantly an information security and data privacy specialist.

Shashi

@stephaniel - Excellent thought on the dream team!

boblf029

The brainstorming on this question has been of a uniformly high quality. I would just add that not only the composition of the team is important but the timing of adding and subtracting staff and consultants to the team must be worked out. For instance the ethicist and data security security people should be on board at the outset while a high powered statistician could be a consultant once data have been collected or new data are contemplated to be collected etc.

Karan

I agree with @boblf029, excellent brainstorming! I'm curious if some of the mentioned expertise might be in short supply. If so are there recommendations on some expertise could be shared across teams?

boblf029

I absolutely agree with Karan that sharing of expertise is the way to go. A statistician need not be dedicated since the only role of the statistician is to deal with certain technical issues such as sampling, imputation, theory development and statistical significance. The statistician has little to do during the data collection phase and is available for other projects at that time. The ethicist is part of the team doing the initial planning and available to deal with unexpected questions throughout the project but generally is busiest at the beginning since the idea is to avoid trouble before it can start. The barefoot doctors have some input at the beginning but are busiest during the data collection phase and largely done after that. It is probably easiest to recruit and retain various staff by scheduling projects in such a way that staff can transition from one study to another within the rubric of closing data gaps..