Qingfan will use co-creation to adapt an eHealth tool for patients hospitalised with Chronic Obstructive Pulmonary Disease (COPD). To advise her approach, Qingfan has been reviewing the eHealth literature. It soon became apparent that there are a number of considerations when developing eHealth tools in a hospital context. In this blog, she argues that a system level perspective can shed more insight into the levers that drive change, and is needed to build sustainable eHealth tools. 

Over the last decade, the use of eHealth has expanded, and it appears to be on the rise, with significant potential to enhance patients’ health and dramatically change the way healthcare is delivered. The World Health Organization (WHO) defines eHealth as: 

“the cost-effective and secure use of information and communications technologies (ICT) in support of health and health-related fields, including health-care services, health surveillance, health literature, and health education, knowledge and research.”   

The increases in accessibility and sophistication of ICT have prompted researchers to study interventions in telemedicine, mHealth, and telehealth. Millions of eHealth tools have been developed, and new eHealth tools are released every day. However, many eHealth tools fail to get implemented or are short lived in practice even if they have proven usability in previous research studies. So we ask ourselves, “Are we focusing research too much on the technology, rather than the service delivery from the user’s perspective?” 

Co-creation, when applied to eHealth, includes ‘end-users’ in the research and development of the intervention. Including end users can increase the value derived from the technology, drive innovation, improve clinical outcomes and lower costs.  But, co-creation of eHealth tools is generally being approached with a narrow lens. It is more focused on specific difficulties with the target demographic that they set out to serve. There is limited work on sustainable eHealth development. According to Bashshur, sustainable eHealth development relies on 1) Improved access, 2) Enhanced quality and 3) Cost containment, none of which may be solved by focusing on a specific population.  

In order to address the issues of access, quality and cost, we’ve got take a step back; and appreciate the broader context of the technology being tested and the target group we are serving. Understanding how eHealth tools are used, based on social and cultural norms, as well as the power structures that govern its use are important in informing its design and implementation. However, this has been relatively unexplored thus far. Instead of taking this holistic view, many one-off co-creation practices are frequently developed to address concerns within the system. However, this disparate approach is not ideal as it may contribute to work being duplicated, and waste time and resources. A system wide perspective can identify the levers that can drive sustainable eHealth development for a broad range of target groups. The leverage points for effective interventions are not always where we want them to be. By linking our work together, we can create a more complete picture of eHealth; identifying the common barriers and the touch points for driving sustainable change.  

A co-creation strategy might help in putting the pieces of the puzzle together. That is, a co-creation strategy at the system level can inform individual projects, whilst considering the project’s contribution to the bigger picture. A co-creation strategy for sustainable eHealth development would first need to appreciate the scale and complexity of the challenge, before tackling it. Developing eHealth tools in a sustainable manner is one of the biggest challenges facing us and is a sound example of a wicked problem. Rittel used the terms wicked and tame to group problems that varied in complexity. Sustainable development of eHealth tools is considered wicked since 

1. there are complex systems in play within ICT and healthcare 
2. the dimensions of the problem are continuously changing as technology advances, health care improves and policy changes 
3. there is no single solution 
4. we cannot describe a solution as “right” or “wrong”. Different co-creators will attach different value judgements (“good” or “bad”) to the solution based on their needs. 
5. issues in one part of the system might be a symptom of problems at a different level of the system 

Transition Design (TD) was proposed by Irwin to tackle system-level wicked problems. It aids in “facilitating stakeholders in the co-creation of visions of desirable futures and identifying leverage points in the large problem system in which to situate design interventions”. Transition Design encourages a transformative view; calls for healthcare infrastructure to be reimagined to support sustainable eHealth development. TD calls for an iterative approach, to reach the desired future state, through the following three phases:  

• re-framing the present and future: looking at the problem from different perspectives and exploring how we might transition from our present to our ideal future state  
• designing interventions: developing interventions to address the problems and facilitate our transition to the ideal future state  
• wait and observing: observe and reflect on the impact that the interventions have had at the system level  

It may be even more important to apply transition design thinking in the context of eHealth development than simply healthcare or ICT, since it incorporates both ICT and healthcare principles. 

The development of eHealth tools is a wicked problem, within complex systems of ICT and healthcare, and requires a level of coordination between co-creation initiatives to identify the levers and increase the chances that tools will be implemented and sustained. When only one or two groups are used to frame the problem, their needs and concerns will be prioritized over others. To put it another way, when problems arise in a specific population or group, the most effective intervention points may be located outside of that population or group.  There are leverage points situated in a system, where small changes can have a big impact.  Thus, when confronted with wicked problems, it’s critical to try to adopt a system-level mindset. We propose that stakeholders involved in co-creating sustainable eHealth tools do not begin by servicing a specific group or concern. Instead, stakeholders should begin by gaining a shared understanding of the system, then look for leverage points for system-level change. In this case, methodologies and tools within transition design thinking have a high potential to handle those difficulties. 

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Danielle has joined Health CASCADE from the World Health Organisation (WHO), where she had a chance to use co-creation in her work. In this blog, she reflects on both the successes and challenges of co-creation; presenting the areas where Health CASCADE could help. 

Public health is defined as “the art and science of preventing disease, prolonging life and promoting health through the organized efforts of society.” This definition is the backbone of what the World Health Organization (WHO) does daily. Since its birth in 1948, the WHO has evolved to be a global United Nations agency that connects nations, partners, and people to promote health, keep the world safe and serve the vulnerable. It directs and coordinates the world’s response to health emergencies and promotes healthier lives for all.  

As a young global health professional, I was very proud to begin my career at the World Health Organization. My adventure started there in 2015, and I continued to work in different teams in WHO Regional Office for Europe, and WHO Headquarters, until the end of 2021, when I leapt back into academia, by joining the Health CASCADE network as a PhD Fellow.  

Source: WHO/Europe Photographer, Mission in Georgia, 2015 

My Introduction to Co-creation 

While my career started on the Antimicrobial Resistance team (mission pictured above), my understanding of the complexity of addressing pressing public health issues was deepened when I joined the Public Health Services team. As a team, we were tasked with supporting countries in strengthening their public health services. We answered this call by establishing and convening a community of practice, which we called the Coalition of Partners (CoP). This platform was an invitation for collaborating with decision-makers and experts from national public health services, international organizations, and academia. We aimed to convene the top expertise and resources the European Region had to offer, to share lessons learned and co-develop context-appropriate solutions for national and regional challenges.  

Through establishing the CoP, we embarked on a three-year co-design process, which included countless design meetings, and numerous participatory workshops. Thankfully we were aided in our pursuits with the support of participatory facilitators. However, we very much were building our whole co-creation process from scratch – as there were no evidence-based guidelines for executing this process. Therefore, we faced many challenges and pitfalls.  

For instance, we attempted to create a sense of ownership among all members of the CoP, but we were faced with balancing that desire with the limitations placed on us by donors and our organizational mandate and policies. Furthermore, we found that without concrete follow-up actions, the momentum, motivation, and trust from our co-creators was waning. Additionally, since there was no way for us to accurately predict our next steps, it was difficult to gain buy-in from key stakeholders within the public health community. Even with those challenges, we did make an impact in Ukraine, Estonia, Finland, North Macedonia, and other countries facing wicked problems, and my interest and belief in the power of co-creation was sparked!  

Source: Photos taken by WHO/Europe photographer in Slovenia and Estonia, 2018 

Applying my Learnings 

My career in the WHO progressed, and I was given an exciting opportunity to work in the Global Coordination Mechanism on the Prevention and Control of Noncommunicable Diseases (GCM/NCDs) at WHO Headquarters. Established in 2014, this was the first and only WHO instrument aimed at facilitating multistakeholder engagement and cross-sectoral collaboration for preventing NCDs.  

When I joined the team in 2020, I emphasized the value of using participatory methods to engage communities and create meaningful collaboration. Bringing my experiences and lessons learned from the CoP, I drove home the importance of unbiased data collection and analysis, and the execution of clear follow-up actions with all stakeholders. Our team recognized the need for co-creation, so I designed a new methodology we named ‘NCD Sprints.’ This methodology aims to serve as a model for identifying and addressing pressing challenges faced at the national and regional levels. I also co-led the design of their first participatory workshop to engage People Living with NCDs (PLWNCDs) (report here). 

However, again I was faced with the challenge of finding an appropriate co-creation model or a body of literature where I could find supportive materials. For instance, we had to consider political factors, as well as ensure the protection of the populations we were co-creating with. Furthermore, due to time constraints, it wasn’t possible to answer the research question, ‘How can we use co-creation in public health?” Consequently, we would have benefited from access to a set of literature that represented true co-creation — where we could find similar cases or gain inspiration from other people’s experiences.  

Due to its initial success, the GCM/NCDs are expanding this PLWNCDs engagement to all six WHO regions in 2022, through a series of workshops to co-design a global framework of action (See more here)! This is a great accomplishment for the team, and those participating, but they still face the challenge once again in finding the best, evidence-based way to execute this important engagement process.  

Health CASCADE can help 

I am sharing my story with you because I think many people who have attempted to address public health challenges using co-creation, are also faced with similar, unanswered, questions – What are the steps of the co-creation process? Who has done co-creation successfully?  How do I argue that my approach is the best course of action? How do I know when my co-creation process is done? How do I evaluate my process and our product? 

Public health has evolved over the past two centuries due to changing threats to human health that vary with time and geography. Therefore, it is time to evolve our research methods to appropriately engage those that are facing these threats. I imagine many will agree that co-creation is a promising way forward. Health CASCADE is up for the challenge, and I am proud to be a part of this ambitious endeavour!  

Source: Participatory Grant Making  

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