CEO at the Relevance Network, Craig Carty, talks about his drive to create access to quality services through multi-sectorial integrated partnerships, and the importance of using innovative mHealth solutions to manage and treat chronic illnesses.

Tell us about your professional background and interest in eHealth.

In my early days, I was an activist lobbying policy makers in Philadelphia to provide equitable access to HIV treatment and accelerated R&D for ARV drugs. This was at a time when the HIV epidemic was hitting the streets and a lot of my surrounding community members were being lost to AIDS-related complications. During that time it became obvious to me that there was a firm disconnect between the needs of patient populations and the commodification of medicines. So I decided very early in my career to focus on building relationships between social and biomedical movements.

My work in the health sector gained a foothold when I was in graduate school at the University of Pennsylvania. To fund my degree, I worked in an infectious diseases clinic with the Centre for AIDS Research, which gave me some great exposure to hospital operations: how clinical trials worked, what regulatory affairs, ethics and bioethics were all about, as well as all the nuanced needs of key patient populations. Since the university had a really strong mentorship model, coupled with a solid community focus, I learned from some amazing people about the importance of rigorous research that is informed and guided by beneficiary populations.

My interest in eHealth was born of those relationships. At one stage we were conducting early phase trials across clinics in Philadelphia with the Wistar Institute, a cancer research Centre of Excellence. The research spanned three sites: the University of Pennsylvania, Drexel University and a clinic called Philadelphia Fight. We realised that all the moving parts were just too cumbersome to manage using conventional, paper-based methods. Together with my colleagues we began to incorporate all the research activities using digital frameworks, hence my intro into the eHealth world. We worked together as a team to develop an electronic tool that guided the patient interviews and the collection of biological specimens, alerted the lab scientists to prep for processing, and then subsequently closed the loop by automating the output of the results. This was hugely successful and made me realise that these kinds of digital platforms are the way of the future.

Shortly thereafter I was appointed as the Director of the Centre for Health Promotion, which was a National Institutes of Health-funded behavioural research unit located in East London at the University of Fort Hare, in partnership with the University of Pennsylvania. I relocated to East London in 2008 for what was meant to be a two year stint abroad. However, South Africa seems to have adopted me and vice versa, because nearly eight years later I have no plans to go anywhere else for the foreseeable future.

Tell us about your consulting firm, the Relevance Network.

After the projects were completed at the Centre for Health Promotion at the University of Fort Hare, I was put in the awkward position of having to retrench a significant number of staff. In response, I tried to create a space in which the amazing team could continue working together in the health and social development spaces. Thankfully, we were given that opportunity in late 2013 due to some new project work, and two of the senior research team from Fort Hare – Lulama Sidloyi and Nobubele Monqo – came on board to create the original core of the Relevance Network.

We borrowed our name from the field of genetics; a Relevance Network is when two or more nodes connect and result in a significant co-expression. I thought that concept translated well for our company mission, which is to support human rights and access to quality services through multi-sectorial integrated partnerships.

Let’s talk about some of the key areas that you work in, particularly eHealth programming and data harmonisation.

While we provide services related to strategic planning and evaluation specific to health and social development and systems strengthening, what we really like to do is to connect the different eHealth initiatives from the public and private sectors because it promotes conversations that results in best practices. We have a lot of input from different partners and collaborators who are working in different parts of the world, and we find that things are more scalable and sustainable when your work is informed by a global network.

For example, we’re now working with the Elizabeth Glaser Paediatric AIDS Foundation (EGPAF), Right to Care and the Ministries of Health in multiple countries in sub-Saharan Africa to support Janssen’s New Horizons Advancing Paediatric HIV Care Collaboration. Our role as an implementing partner is to go into participating countries – those who are receiving donated HIV medicines from Janssen – and evaluate their in-country medical records systems and architecture to understand how we can harmonise the disparate systems to promote south-to-south collaborations. The end result is the assembling of big data that can be presented visually and robustly.

When electronic medical records (EMRs) were launched in parts of sub-Saharan Africa, South-East Asia and South America, we saw multiple systems being introduced in parallel, and not all of these systems were capable of speaking to one another. Initially, under New Horizons, the idea was to go into participating countries to see if we could introduce one EMR in HIV clinics, but we soon discovered that their systems were way past the point of effective transition. So the solution was to look at how we could combine all the data from these disparate systems. As a result we are building a platform under this project, called OASIS, which is Opportunity + Access = Shared Information Spaces. The end result will be the democratisation of health information which will support local capacity, meaning capacity for emerging researchers and clinicians to access their own data and examine trends in a more meaningful and rapid manner. Our partnership here aims to bring large amounts of data to the fore, coupled with trainings that are provided by our partners to capacitate early career investigators.

What was your take on the International AIDS Conference in July and the trends in Big Data? Are we moving towards using Big Data effectively in HIV/AIDS or are we still grappling with challenges such as data governance and data quality?

Some incredible collaborations have emerged over the past few years in HIV areas specifically. For example, there is the Cipher Cohort Collaborative, which works very closely with the International AIDS Society (IAS) to showcase big data sets from multiple clinical sites. A great example of this is the IeDea Cohort that is managed in large part by UCT and Prof Mary-Anne Davies, a person who inspires me.

However, what I feel is missing from big cohort datasets, are the qualitative bits. One thing that we know from the literature, and also something that resonated very strongly at the International AIDS Conference, is that we can have all the bio-marker data in the world to inform policy or guidelines, but the answers to many questions lie in qualitative data. For example, ‘What are the social and contextual challenges that face key populations in different settings? How does that impact their health-seeking behaviours? Or how does that impact their long term health outcomes?’

One of the big messages that came out of the International AIDS Conference this year, as well as in previous years, is the need to collaborate with others working in communities impacted by HIV. They are the true experts. Another massive finding is the role of social protection – how having a strong community with a de-stigmatised environment results in much better health outcomes for those who are not only infected, but also affected by HIV.

The question then, in consideration of both clinical outcomes and social context, becomes ‘how do we integrate social science enquiry into these digital spaces?’ Those are things that are beginning to be interrogated by UCT’s AIDS and Society Research Unit, and also by the University of Oxford’s Social Policy and Evidence-Based Social Intervention Department.

Tell us more about your work with the UCT AIDS and Society Research Unit.

We like to start projects by doing feasibility assessments, and we like to ensure that whatever output we deliver is grounded in robust development and based on evidence. As an academic writing a doctorate at Oxford University, I started to investigate the potential of using mHealth as a strategy to engage with not only adolescents living with HIV and chronic illnesses, but also those who outright refuse to attend their clinic appointments or struggle to manage their own care.

If you look at interventions that are being rolled out in places like South Africa, there are lots of interventions that work and are very effective in increasing attendance to scheduled visits and increasing adherence to medication. But what about that percentage of patients who are considered outliers, otherwise known as that small group within a population who are not impacted by traditional interventions? I set aside my role as CEO of TRN to chase this question as a doctoral student, and with generous support from UNICEF South Africa, we [UCT and Oxford] started to interrogate how to connect “outlier” youth to care using more novel means, which brought us to the concept of mHealth.

I’m happy to say that we have just completed the first part of that research and work, and are now moving on to the development phase in partnership with thought leaders like Dr Musaed Abrahams of Aviro Health and with supervision from world experts on HIV social protection and adherence, including Dr Lucie Cluver and Dr Rebecca Hodes.

The aim of the mHealth portal design is to take literacy out of the equation and effectively replacing it with a series of novel, simple games – a really basic game application that allows for symptom reporting, a mapping of your social context and then future planning using avatars and emojis. The cool part of this endeavour is that it seeks to validate the use of emojis and visual data as surrogate markers that measure both qualitative and quantitative values like adverse event reporting, sentiment and ideations.  Another goal of this project is to create a space where youth can engage with multiple eHealth solutions that are tailored to their needs, such as the NDoH’s B-Wise mobi site. Our goal is to create partnerships and collaborations that result in a portfolio of eHealth and mHealth solutions that can be taken as they’re needed rather than just flooding the market with more than what the users may need at any given time.

In terms of the gamification component to mHealth apps targeting young people, what did you learn from the process? What would you share with other mHealth entrepreneurs who are trying to engage with their audience and give them some incentive to interact with their disease and manage it themselves?

The first thing that I would advise would be to take a back seat and listen to what your beneficiary population has to say. We carried out a series of three different engagements: the first was in the Eastern Cape with a group of rural schoolchildren and we asked them to create or envision a virtual space that would represent a clinic for them. They basically drew pictures of clinics; they didn’t create anything that could be translated into an application or something interactive. This exploratory exercise informed our next strategic approach, and highlighted the weaknesses in our own research design.

So then we went to the Western Cape and engaged with another group of youth informants. We explained more about the process of application development during these sessions. They had a keen interest in being part of the process. They wanted to understand how we were developing all this technology so they could learn how to use it and become first adopters.

We took that information and distilled it into a much more targeted session, and went back to the Eastern Cape and pulled together some focus groups. We gave the participants some options and asked them, “if you were to be represented in a virtual space, what would you want your character to look like? Do you want to be pop star, or do you want to be a sports icon, or a cartoon character?” In the back of our heads we were thinking if they choose to be a cartoon character, how do we translate that physicality into something that’s quantitative in terms of symptom reporting? A kidney on a cartoon character wouldn’t likely translate well into the physical placement of a kidney on a human. Interestingly – and thankfully – enough, what we found is that the kids wanted to be represented in these virtual spaces as themselves. That’s something that we would never have foreseen, and it’s something that we never would have learned if we had just ploughed ahead with designing this game without engaging with the intended users across a number of different sessions.

The other thing that we found to be fascinating is the fact that within this portal, participants liked the idea of being able to envision their future, an area where they can map out a pathway to achieving their goals. We know from other interventions that when a young person has a vision for what they want to do in the future, they are much more likely to stay in school and much less likely to engage in risky behaviours –  they delay their sexual debut, use condoms the first time they have sex, etc. To tackle this, we started asking them how they wanted to envision their future using visual inconography in a virtual world, and interestingly what we discovered is that they had very clear sets of ideas of what they wanted to be when they got older, but very little idea of how to get there. This informed us that not only should we not just introduce a future planning engagement within this virtual space for them, but we should have feedback information that takes them through the steps to achieve their goals. That then brought us into the realm of basic education and skills development – these are the things that we are now investigating that we wouldn’t have even thought of before.

My advice to anybody who is enterprising within this space of creating targeted tools for specific beneficiary populations is to listen and not try to guide the process too much. You never know where this open mindedness will take you!

What do you think are the key messages that people need to grasp to start reducing the stigma around HIV?

That’s a tough question, and one that I’ve grappled with for decades now. In short, we need to be responsive to the knowledge, beliefs, attitudes and practices of different populations. I don’t think that we can approach the issue of de-stigmatising HIV using one clean package that’s going to fit all contexts. For example, in places in Limpopo where you have traditional leadership and a somewhat patriarchal society, you can’t address HIV stigma by messaging it through a radio campaign alone. You need to engage with chiefs and leaders at the grass-roots level to educate in a way that’s appropriate and respectful.

We’re also starting to welcome a generation of youths who are growing up for the most part understanding that HIV is not a big deal. They’ve been exposed to programmes and life skills and life orientation that tells them, rightly so, that HIV is a chronic but manageable illness, and there is no reason to feel differently about a friend of yours who may have HIV. Similarly, there’s no reason to feel bad should you be living with HIV yourself.

It gets a bit more complex in urban areas, where people are migrating in increasing numbers. There is a very interesting intersection of rural and urban individuals in these spaces who may receive and indoctrinate messaging differently. I strongly believe in investing in these varied populations, and when it comes to educating an older population you really need to go to that community and do it hands on.

When it comes to monitoring diseases and populations, digital health is a combination of on-the-ground interventions; consistent, accurate evidence-based messaging; and a digital platform that can support reporting on the outcomes of these different programmes that is going to make a difference.

What does the Relevance Network hope to do in the future in line with your vision to reduce disease burdens, etc.?

We’re pretty simple. We like to partner with like-minded organisations that at their core are philanthropic, whether that means offering free services or developing products that are open source, scalable or freely available. That also includes organisations that offer training in parallel with the development of their tools. We’re also looking for partners with expertise in big data, like cohort creation coupled with novel analytics; people who are familiar with algorithm design to tease out bits and pieces of data that may not be readily apparent. We like working with people who can visualise data to make it accessible to lay people who may not understand complex statistics, or to young researchers who may be trying to understand their first set of data. But in particular, we like to work with people who can translate the evidence from their projects into action.

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