A small step towards big data in mental health
This blog is a repost from the BasicNeeds website. The original blog by: Shoba Raja, Chantharavady Choulamany, Fiona Charlson, Sandra Diminic can be found here: A small step towards big data in mental health.
At a time when big data is fast becoming a buzzword that spells big money, we are in a line of work where even basic data is scarce. We work in mental health.
You can easily find out how many people own mobile phones in Kenya or how many Facebook users live in India, but there is no data that gives accurate numbers of how many people are actually affected by mental disorders in most countries, especially low and middle income countries.
Mental and substance use disorders surpass each of HIV/AIDS, tuberculosis, diabetes and transport injuries in terms of their disease burden on populations Apart from the human misery,the global financial impact of mental disorders (i.e. lost economic output) in the next 20 years is estimated at US$ 16 trillion – which is 25% of the 2010 global GDP. Yet more than two thirds of affected persons worldwide and more than 90% of those in low resource countries do not have access to treatment. Unsurprisingly a majority of them are from poor communities in less developed countries. These silent sufferers are often not included in any official or even unofficial statistics.
A few weeks back the United Nations made a historic statement on the importance of mental health by including it in the new Development Agenda 2030. This is timely considering the fact that a majority of countries allocate very few resources for mental health (on average less than US$2 per capita in low and middle income countries, according to the World Health Organisation).
Lao PDR with a population of 6,987,260 is among the least developed of nations. With severe challenges of poverty and other development issues to combat, mental health was not on the government’s focus or agenda. To date, there have been no surveys to assess the prevalence of mental disorders in the general population. Moreover there are only 2 psychiatrists within government for the entire country.
In 2012 the Ministry of Health (MoH) in Lao PDR, took the important step of developing the “National Mental Health Strategy by 2020” where a key objective is to undertake prevalence studies. BasicNeeds, an international mental health non-profit, is the only organization that runs a mental health programme in the country, working closely with the MoH since 2007. The Queensland Centre for Mental Health Research (QCMHR) is a collaborator in the Global Burden of Disease study and seeks to continuously update mental health prevalence data, especially looking to collect data in countries that have little or no data.
In 2014-15 the Lao PDR MoH, BasicNeeds and QCMHR jointly undertook a pilot prevalence survey in Vientiane Capital covering its 9 districts with a sample of approximately 700. The survey was funded by the University of Queensland.
Contrary to a commonly held impression that surveys are “dry and boring” we found the entire experience interesting and stimulating! After a number of Skype calls linking the four of us located in Laos (Chantharavady), Australia (Fiona, Sandra) and India (Shoba), in December 2014 we met in Vientiane, the capital city of Lao PDR. We spent an entire work week planning and setting up the project. This included setting specific time frames, selecting site locations, criteria for recruiting data collectors and designing their training. We detailed the data collection plan including deciding the survey instruments to use. We discussed the development of a mobile device-based data collection system. During the week we also met a number of key MoH officials to coordinate the actual action on the ground during the survey. Our work was interspersed with lovely lunch and coffee interludes! Vientiane is a charming city and its people polite and gentle.
We obtained ethics clearance from the Laos National Ethic Committee for Health Research and from the University of Queensland. We then wrote to Dr. David Sheehan, author of the MINI, seeking his permission for its use. The MINI was our lead survey instrument to measure the prevalence of mental disorders. Dr. Sheehan was very kind and generously granted us permission to use MINI version 6 free of charge; we translated this into Lao for local use. The other survey instruments we used were the SF-12 to measure health status and a questionnaire that we developed to gather demographic information as well as service utilization patterns of the respondents.
We then worked closely with our technology partner Mahiti in Bangalore, India, to develop a mobile data collection App. It supported direct data collection with the SF-12 and the demographic questionnaire. With the MINI, interviews were scored on paper and the App supported entering the final diagnoses for each section. The App was loaded on to Android tablets.
By end-May 12 data collectors had been recruited and all of them attended a three day training session. The training initially focused on the trainees gaining mental health literacy, then introduced the survey to them, and went on to the survey instruments and contents. Once these basics were clear the training concentrated on how to select respondents and how to interview covering important concepts of consent, confidentiality and data security. A major part of the training focused on understanding the symptoms of mental illness covered by the MINI and practicing its administration and scoring through role play. The participants were then introduced to the mobile data App and practiced using it by doing mock data collections with their peers.
In June and July 8 interviewers (the trained data collectors) formed two teams and went out into the field with their supervisors. They carried with them their field kits comprising of IDs, village maps, training notes for quick reference, participant information sheets, referral forms, permission letter from the MoH, copies of the MINI, and tablets loaded with the App. They met each morning at 7.30 am in the BasicNeeds office and set out together. As they worked their way through the villages they were supported by village leaders as required. They came back to the office every evening to wrap up the day’s work. Here they used the internet to instantly transfer the day’s data on to a central server. This allowed the four of us to review data as it came in and of course eliminated the entire step of someone sitting down to do data entry – a fantastic facility.
Throughout the data collection period the interviewers were closely supervised and supported by Chantharavady who heads BasicNeeds in Laos and is also one of the 2 psychiatrists in the country. She had de-briefing sessions with the interviewers every evening. This proved critical not only to ensure high quality data but also to keep the data team highly motivated and supportive of each other, while continuously improving their interviewing techniques.
We are now in the process of analysing the data.
Looking back at the last one year spent in planning and executing the survey a few things stand out for us, the core team. The project brought together complementing expertise from four different organizations i.e. MoH, BasicNeeds, QCMHR and Mahiti. We feel this mix helped us design and plan the survey in a way that made the execution effective and efficient. The strength from our ‘collective’ included pooling ‘our brains’ and other resources – with the result the survey cost us only AUS $ 30,000. This suggests replication in other locations and countries is feasible.
The survey built local capacity (interviewers), a human resource that can be used in the future for further surveys. In addition, we worked closely with local health and district authorities of Vientiane Capital province. This played an important part in making the survey process go smoothly. For example, officials helped us with maps and other details at the sites. Local authorities assigned volunteers to accompany interviewers. Volunteers waited outside until the interviews finished, but were ready to help if a need arose. We felt very encouraged by the interest and willingness of the respondents to participate. In fact if they were out when the interviewers visited they were keen to set up another interview date! Overall having so many people involved from the MOH, district offices and communities helped to bring the issue of mental health into their focus; awareness and identification and referral of people experience problems to existing services was a major spin off.
We are of course looking forward to completing the analysis and getting to the findings. But we are looking beyond – to doing more surveys in more countries so as to steadily build up big data for mental health.
- BasicNeeds (Innovation)