Researching mHealth in Uganda
I have spent the last 2 months in Uganda working with the Palliative Care Association of Uganda (PCAU) on their initiative to gather data on palliative care in Uganda by mobile phones. First it may be necessary to explain what palliative care is. It is the holistic care given to a patient with a life-limiting illness and their family, which includes physical, psychosocial, and spiritual care. PCAU and their partners at the University of Notre Dame and the Center for Hospice Care have pioneered this effort to collect data on palliative care in Uganda. Previously, there was very little data on palliative care and even less on a national level here in Uganda. The Ministry of Health has recently started collecting data on two indicators, the number of patients seen and the amount of morphine used, on their required reporting. However, this data hasn’t presented a full picture of palliative care in Uganda, so PCAU aimed to gather more in order to aid in advocacy. From previous research it was determined that mHealth, or mobile health was the way forward. This enables quick data collection by a user on a mobile phone, in this case a smartphone. The data is then easily and quickly retrieved in order to promote timely evidence-based decision making.
Last year, 2015, was the pilot phase of the project, and it went very well. Lessons were learned and changes were made to help improve the data collected and the way of collecting it. Now we are in Phase 2, or the scale up phase. These last few months we have been training new participants, executing a test period, and evaluating the data quality. The training was planned out very well, except maybe for the fact that it was on the day of the President’s swearing in, which was a highly contested political situation. Social media and cellular networks were blocked or slowed to a snail’s pace, which of course negatively affected our ability to do practical teaching on an mHealth application that requires network and data usage. However, we struggled through it and did what we could. I understand this is all part of global health.
The test period was for four weeks and involved ten participants submitting a form on palliative care at their respective facilities each week. During the process we met yet another hiccup with a cellular network provider and their airtime usage plans. All the airtime we had loaded on participants’ phones that was supposed to last for a whole year disappeared in just a few days. After multiple trips to the network customer service center and even the headquarters and many headaches, we finally were able to fix the problem. However, this issue raised a huge concern for the sustainability of our project, not to mention the possibility of switching networks in the future. The rest of the test period went as expected with some learning curves for the participants and myself alike.
During my stay in Uganda I experienced several aspects of the country. Because of the nature of the project, we needed to travel around the country to follow up with and support each of the new participants. This gave me the opportunity to see almost all the regions of Uganda! I was able to experience a lot of the culture through interactions with my Ugandan counterparts during our traveling and ate different types of food. To be completely honest, Uganda is not the best place for a picky eater like myself, as it was difficult to find a local food that I liked to eat. But fish and chips were generally available. These cultural differences reminded me that I have a lot to learn about working across cultures. In the end I made some new friends and gained a lot of knowledge on mHealth and Uganda.
I hope that the work we have done in the last two months and the work that is going to continue for the next month will have a positive impact on the project and help move it forward. The strong partnership between PCAU and ND will only grow and hopefully continue to improve data collection on palliative care in Uganda. And PCAU will be able to use the fruits of this labor to advocate for palliative care in Uganda and improve the lives of those living with life-limiting illness in Uganda.