An Interview with a Maintainer: Rachel Achieng’ and the maintenance of public health data

On July 20th, 2023, Lauren Dapena Fraiz (The Maintainers) met with Rachel Achieng’, a digital rights researcher based in Nairobi, to discuss more on the question of access and maintenance related to public health data in Kenya. Rachel gave us an overview on what a common experience for patients is, which is often riddled with questions on what hospital they can access and lack of clarity on data protocols, for example, how records are kept and updated. Rachel advocates for more maintenance and connectedness among recordkeeping systems across Kenyan medical centers, as well as greater transparency for the general public on how their data is stored.

Rachel Achieng’, a digital rights researcher.

The following is an edited and adjusted version of the interview conversation, for readability purposes. A full transcript of the interview can be offered upon request.

Lauren Dapena Fraiz: Thank you for meeting with me today. The purpose of “Interview with A Maintainer” is to delve deeper into the experiences, perspectives and challenges faced by individuals who actively engage in crucial tasks of maintenance, repair and care – such as yourself. And by capturing your insights, The Maintainers seek to foster knowledge exchange and highlight best practices, and really honor the work of maintenance across disciplines by showcasing the perspective that you’re sharing through this interview. So, tell us a little bit about your background, and how you came to be a maintainer, or someone that dedicates a lot of time to repair, care or maintenance.

Rachel Achieng’: I am a researcher, a digital rights researcher. How I came into this space is, I would say, is through curiosity. There’s been a lot of developments going on in Kenya in regard to the laws that have been made, and what is actually happening in practice, and health care was one of the things that I looked into. I wanted to know how everything is being run within this space. I find it quite interesting because it’s right at the intersection of technology and healthcare. For a country like Kenya, it (covers) a lot because we are still figuring out the health gap. We’re still figuring out how technology fits into most spaces. So combining public health and technology raises a lot of questions in regard to the maintenance in regards to safeguarding of health data: How is data being handled, and is it being handled ethically? How much is known about that? This is what sparks my interest.

LDF: Could you give a little bit of context of what the public healthcare infrastructure is like in Kenya?

RA: Yes. When it comes to public infrastructure we have EHR: electronic health records. I will just give an example of myself as a patient. If I, Rachel, were to visit a hospital today, here’s the typical process: the hospital would gather a lot of sensitive data from me, such as my address, emergency contacts, medical history, and related information. This data is then stored within that specific hospital’s database. However, if I were to visit another hospital, whether it’s within our county or in another city, the challenge arises because these systems are not seamlessly interconnected. Accessing my information isn’t straightforward unless it’s at a branch of the same hospital. For a different hospital entirely, the procedure remains identical, necessitating the repetition of data submission.

This is how they collect, handle, manage, and store data in the hospital’s database. Based on my experience, there have been times when, if I don’t visit the hospital for two years, they no longer have my data. So, I have to start the process all over again. This isn’t just an isolated case; it’s something that has happened to many people. Even though we have electronic health records, there’s always a physical file whenever you visit the hospital. So it is very hard to pinpoint, whether these electronic health records are working or not. There has been research in some specific countries, and Nairobi is one of them. They were just looking at the infrastructure, and how the electronic health records are being stored. One of the gaps that they identified was in regards to actual interconnectedness: the lack of interconnectedness and the lack of interoperability when it comes to that. I hope that paints the picture clearly.

LDF: Regarding the question of access, yes. I am not knowledgeable on how health data is stored in this context. But I’m surprised to hear that it could be lost, at some point even as short as two years. Is there any reason why the data gets to the point of being lost?

RA: I’m not sure. I’ve never interacted with one of the systems to actually know how they are set , (but it is through the) Ministry of Health. So maybe they wouldn’t really be keen on keeping that kind of data, because when they move, they wouldn’t really need it, these bytes. And then there’s also the aspect of training. They are trained on systems and whatnot, but there’s often a significant gap between training and implementation. You’re taught what you’re supposed to do and how to go about it during training. However, when you’re out in the field, the reality is often quite different. What you were trained on may not be what you’re actually using, and even if it is, there’s often a lack of proper infrastructure to support it.

LDF: So there’s a disconnect between the reality of how that data is treated, or the people that are more doing the maintenance day to day tasks. Okay, I’ll go with another question. How do you consider that you contribute to repair care, or maintenance and in your community, and this particular issue that you’re interested in researching?

RA: My contribution would be, through research. Researchers play a crucial role in recommending improvements, primarily focused on these protection maintenance practices. As a researcher, my approach involves identifying vulnerabilities, scrutinizing policies and regulations, assessing innovation processes, and evaluating the promotion of awareness through training. This forms a chain of action, beginning with research and extending to the examination of systems, policies, training, awareness, and continuous improvement. From a maintenance angle, I would look at it as improving the maintenance protocols. When the research is able to identify the vulnerable areas, this shows areas for continuous improvement, it would essentially lead to an improved maintenance of the protocols. In this context, improved maintenance means making data more accurate and reliable. This includes regularly updating data, removing obsolete categories, and correcting errors. It could be anything from updating patient health records to cleaning up e-commerce product categories. This would essentially lead to ensuring that the data is being handled in a proper manner, like the systems that are set up, are set up in a way that they can manage and handle data properly. So, my primary emphasis lies in enhancing maintenance protocols through evidence-based research. It’s about delving into the core issues, understanding the problems, and seeking concrete ways to drive improvement.

LDF: How interesting– Do you think it’s more that things would improve if just citizens or patients could access the data? Is it a question about access? Is it a question of that the data is there, but there is nobody overseeing?

RA: I think it’s a problem of access to data. And not just to the patients, but also to the healthcare practitioners. And the facilities as well, to a certain extent. In our country, we have NHIF, the National Hospital Insurance Fund, which is designed to provide coverage wherever you live. But that’s not usually the case. NHIF gives you a specific list of hospitals that you can go to. And with these hospitals, it’s the same procedure all over again. My brother and I actually live in the same house, and we recently found out that the hospitals that we can access are very different, even if we live in the same area. So that was very questionable. That is where the aspect of overseeing comes in- who is setting up the systems? How are they going about it and improving them? How is the system being maintained? What is the criteria that is being used to decide Person A can go to this hospital, Person B can go to this other hospital? I would say it’s both access, so to the patients, to the public, to the healthcare practitioners, and to the facilities as well. Sometimes you go to a hospital, and they tell you, “No, we do not take NHIF [the National Hospital Insurance]. So it’s those three [patients, healthcare practitioners, the facilities] and then also overseeing who is making those decisions on how the data will be handled and processed, on how the data will be shared on the interoperability systems that are being set up.

LDF: In this case you and your brother are assigned different hospitals, do you have an idea of why that is? You’re saying that there’s like a transparency problem, that people are encountering a lot of unknowns and that you never know what you’re going to be assigned. And you don’t know if you go to hospital and your insurance is being taken. One of the problems is that that information is not public or available…

RA: It’s not publicly available, it’s also not transparent. So what happens is that you’re given numbers, NHIF numbers, and then you just log into the system, you type in your number, and then you get a list of the facilities that you can access. So there is no clear criteria, in most instances, on how this is done except in the instances where one is a civil servant.

LDF: I guess also, having that type of setup creates a lot of chaos that it also makes the hospitals have problems with people just going there and not knowing if they shouldn’t be there.

RA: Considering not everyone is tech savvy enough to know that they can actually look this up on the website. You know, that’s also a problem.

LDF: Yeah, I think that resonates with a lot of people who just have that type of information very obscured for some reason. Another question for you: What is something that people might not know about the type of work that you do? If you can kind of explain the relevance or the impact of your work?

RA: The impact? I’m approaching this from various angles. When I analyze problems and challenges, I usually take a one-person perspective, putting on my researcher’s hat. However, I acknowledge that this viewpoint may be somewhat limited because addressing these issues requires collective efforts. It requires everyone to collaborate and contribute. What others might not fully grasp is that, while it may seem like a one-person perspective, it is intricately tied to research and how it fits into the bigger picture.

LDF: Is there anything else that you want to share about your work? In regards to this issue of lack of access to public health data, what is your aspiration for that?

RA: My aspiration for this is to place a strong emphasis on meaningful training and capacity building. This involves three key groups: the general public, healthcare practitioners, and healthcare facilities. Each of these groups operates in different capacities within the healthcare system, and access to vital information can be challenging. For the general public, it’s often difficult to access this information unless you actively seek it out. Healthcare practitioners receive training, but there’s a noticeable gap between their training and the realities on the ground. The same applies to healthcare facilities. Even national bodies responsible for healthcare could benefit from training, especially on the importance of routine maintenance, which doesn’t necessarily have to be complex but can make a significant difference in day-to-day operations. You can perform specific tasks daily as part of routine maintenance. This is the approach to dealing with issues while maintaining open communication.

LDF: It was super interesting to kind of hear your perspective. Even though you’re talking about the specific case of Kenya, I know this is going to resonate for so many people, because it’s a very international problem on how, on one hand, it makes sense to protect health data to a certain extent. But on the other hand, it just doesn’t make sense that you will not be able to know who your doctor is or what the criteria has been to assign you to one, so it’s super important advocacy work.

RA: Thank you!

Resources provided by Rachel:

Preferred citation: Achieng', Rachel. Dapena Fraiz, Lauren. Interview with a Maintainer: Rachel Achieng'. The Maintainers. https://themaintainers.org/an-interview-rachel/

September 28, 2023 | Blog · public health