The Transformative Power of Singular Stories: Making the Case for Qualitative Evidence in Healthcare Contexts in Colombia

INTRODUCTION

This is a story about stories. It is a tale about the transformative power of stories in medical and healthcare contexts seen through the experience of a research team working with an insurance company operating in Colombia’s complex healthcare system, and how, when taken as valid evidence, stories can be complemented with quantitative research and be a tool for decision making.

The case study will also evidence the transformation of an organization from a process-centered focus to a people-centered vision and how qualitative research in healthcare contexts is beginning to be recognized. Appreciating a qualitative focus is happening at a slower pace in developing countries such as Colombia, where public and private health systems rely on quantitative data due to government demands based on the performance of health care institutions. These systems are struggling with limited infrastructure, a growing need for chronic care when systems are designed to provide acute care, among other challenges, that prevent them from recognizing the value of other types of data. Thus, there is an opportunity for ethnographers, to show these organizations the importance of working for people, which is a step towards granting memorable experiences, beyond efficiency and fund management.

The transformations that occurred as a result of the project can be understood as follows: first, the client’s mindset was transformed, in the sense that they understood not only the relevance of listening to stories, but of collecting them as well. Second, the user experience was transformed, transcending a list of social security numbers and seeing the wholesome, complex human beings that composed it. Finally, stories also transformed the team, in the sense that they tested its capacities to adapt and to remain resilient in the face of challenges and failures. According to Maria Giulia Marini (Fiorencis 2016), narrative medicine is placed side by side with evidence-based medicine (EBM). On narrative medicine there is an approach to care more focused on human beings: the patients, the healthcare professionals and the relatives allowed to understand the culture, the values, the needs, the passions and the personal and professional projects.

The case study is divided into several sections. First, the context will be described, which consists in a thorough description of Colombia’s health system and its changes and challenges. Afterwards the methodology that was implemented throughout the project will be mentioned, explaining why the team chose the methods it chose. In the outcomes section three key findings will be mentioned, which include the importance of understanding the different between user perception and user experience, the importance of healthcare providers to go beyond healthcare and using stories as input for measuring quality of the service. Then the impact will be presented, focusing on the power of stories to transform the mindset of the client and the team’s capabilities. Finally, a few conclusions will be drawn.

A CONTEXT OF REFORMS AND MORE THAN A MILLION USERS

During the 90’s, most countries in Latin America reformed their healthcare systems to widen coverage and ensure access for patients, and Colombia was not an exception. This country had one of the worst systems in the region, characterized by low coverage (just 30% of the population had access, according to the Ministry of Health), high rates of inequality, old technology and deficient medical practices. So, in 1993, the government introduced an ambitious reform package, described in the “Law 100” of that same year, which stated health was a right of all citizens and called upon the decentralization of health services (Barrera 2014). Since the central government was unable to ensure universal coverage, healthcare would be provided by a series of private and public companies called “Empresas Prestadoras de Salud” or EPS (healthcare provider companies in Spanish)”. EPSs do not provide medical services, but they manage public resources from workers contribution and taxes in order to promote affiliation to the social security system. People join EPSs to be treated in clinics and hospitals called “Instituciones Prestadoras de Servicios – IPS (service provider institutions in Spanish),” which do provide medical services but do not charge patients for them. EPSs would start providing access to quality healthcare, and in return the government would pay them periodically. Thus, insurance became the main instrument of healthcare, and each company would have a limited number of users to look after.

Nowadays, health experts and decision makers have reached a consensus on the positive evolution in coverage and access after this reform was implemented (particularly with respect to the poorest), however, it is also true that these companies are still facing challenges that have shown resistance to solution, as well as new challenges that did not exist during the 1990s. For example, in low and middle-income countries like Colombia, chronic diseases now surpass infectious diseases as causes of death, due to the significant increase in life expectancy that characterizes societies in transition (Forman & Sierra 2016). As many other Latin American health systems, Colombia’s insurance companies and healthcare providers are not prepared for these new patterns of disease, since they were designed to provide episodic or acute care rather than chronic care. Additionally, besides a growing aging population that requires health services more often, the total amount of users in the system has also increased by 15 to 20% each year. To relieve these companies, the 1993 reform has been accompanied by a notorious rise in public spending, but the quality of the service begun to decrease, and the system’s debt still surpasses its returns (Barrera 2014).

It was in this context that one EPS became interested in providing its users a positive user experience even though it was a very process-centric organization. Motivated by the high number of complaints and claims related to the service, the EPS decides to work on improving the experience of its clients understanding that in health contexts, people are exposed to emotions such as fear, anxiety and confusion, elements which had never been taken into account in their evaluations and (key performance indicator) KPIs, which could have great impact on the patients’ experience. Due to confidentiality agreements, the name of the company cannot be disclosed, for this reason it will be called company POP.

POP is on the top 5 EPS in the country, and it is an organization that is extremely sensitive to cost. Any adjustment, however minimal it may seem, can have a very high impact on the total cost. Unlike other industries it is not possible to assign a monetary value for what each person pays for the service and is not directly proportional to the profitability of the total of members. Precisely, by being part of the health system, its income is determined by a value called “Unidad de Pago por Capitalización – UPC (Payment Unit for Capitalization)” which is the annual value that the Health Ministry recognizes for each of the members of the social security system and must ensure coverage and quality according to the “Plan Obligatorio de Salud – POS (Mandatory Health Plan)” for all its members.

Although POP had previously made some efforts to improve the patient’s experience, these solutions had been designed based on internal company hypothesis, thus the projects did not have the expected success and it seemed impossible to generate profitability by increasing the value of the service due to the UPC metric. For these reasons, the EPS decided to do it as a separate project, choosing a team that could dedicate 100% of its time and be able to make the necessary adjustments to the experience in order to diminish a potential reputational risk, which could affect other business units caused by the unification of the brand.

Initially, a POP team with the understanding of the processes was chosen to develop the project, and it was believed that their focus would be on adjusting these processes. However, the team decided to work from a different perspective, they had heard about “customer-centric” strategies and looked for an ally to work with hiring a research team composed of designers, sociologists and anthropologists, a team that quickly acknowledged the company was venturing into unknown territory since they were accustomed to quantitative results rather than qualitative insights. Most companies and healthcare providers in Colombia are concerned about the operation and do not consider the ways in which they are creating a positive or negative impact on their users’ experience. This, plus the fact that the number of users exceeded the million according to official government data (Datos abiertos 2017), implied this project would be challenging, but quite invigorating too.

RESEARCH METHODS

In-depth interviews and projective techniques

As a starting point, it was essential to choose the fieldwork participants very well, therefore POP provided a database that was already divided into 5 patient segments, based on the types of service they used with more frequency and demographic variables such as the patient’s age (client had already done a few things on its own, so the team was not starting from scratch). After the first analysis, this database was thorough and updated so it was possible to understand what services were actually being used by each patient, allowing the team to have a closer look on the different elements to be investigated throughout the research phase.

Based on the database given by the organization, the research team selected 40 patients, 8 per each segment. In-depth Interviews were conducted mainly in their homes and work places where participants could express themselves in a trustworthy and comfortable environment, and where they could feel that POP was concerned about listening to them, something very different from what happens in a customer service center in which the patient must be the one who takes the initiative to be heard. This situation was usually a negative experience for the patient because if he tried to communicate through a telephone line, he could hardly communicate with an advisor and if he approached the place in person, he rarely received a timely and empathetic solution to his problem.

To understand the perceptions and patient’s experience with POP and its different services, the interviews followed a semi structured approach where questions were established as a frame of reference and supported by projective techniques. Projective techniques are tools and formats represented in images, heat maps, journey maps, among others, that allow the visualization of unconscious elements based on perceptions and experiences that are not usually expressed during the conversation. These methods work as effective method as they draw out perceptions, desires and emotions in a creative way (Kalter 2016).

If the project had used only in-depth interviews, the participant could have only answered what he or she considered convenient or appropriate for the researcher or also obtain biased opinions based on factors such as the affinity between the participants and the EPS for being in the same geographic region or the testimonies based on negative trending topics on EPS. However, with these techniques, participants revealed perceptions that they had not mentioned through their statements.

The first part of the interview with the patients delved into general perceptions of the health system, health providers and specifically with the organization. Next, we inquired about their personal experience with different services to which they had accessed at some point. This last exercise was carried out based on mapping exercises on paper to oversee the experience route in each service. For this, a card sorting exercise with different health services, touchpoints and emotions was implemented. This allowed the team recognize pain points, common barriers, leverage points and elements with greater impact on the experience route of each service. It was necessary not only to know their perceptions but understand each detail throughout their experiences.

Shadowing

For shadowing, participants were also selected from the EPS´s information system that maintained data related to types of service and patients who were going to use them in upcoming days.

Figure 1 and 2. Example of informants narrating their stories through projective techniques. Photograph © A Piece of Pie, used with permission.

This accompaniment began at the patient´s home or place of work and permitted the researchers to accompany the participant in a real-life experience with the Emergency Rooms and other health services. For these observations, consent forms were essential. This made it possible to observe times and distances between these and the places where they received their services. With this technique, researchers were able to live the stories and be part of the experience, observing the step-by-step journey for different services: general practitioners, specialists, laboratories, diagnostic aids, claim of medicines, etc. The stories were captured firsthand.

Fly on the wall

Unlike shadowing, the “fly on the wall” observation methods do not concentrate on the experience of a particular patient but focus on different elements of the environment and the experiences of people present in a specific place. This exercise is where the sensitivity of the anthropologist flourishes because every detail is important: from the faces of the patients and their families that have been there waiting for too long to the expression of the nurses each time a sick baby enters the room. The interactions with different actors, space conditions, service protocols, times, among other aspects were observed.

These observations were made at IPS accessed by a large number of patients to request a variety of services. These IPS were selected by POP based on location, number of patients and health services offered where its General Manager was previously informed, and authorizations were carried out with the help of POP.

Figure 3. Example of Observation at IPS. Photograph © A Piece of Pie, used with permission.

ENTER STORIES: A USEFUL TOOL FOR COMMUNICATION

Once the research methods described above were approved and the informants recruited, the team headed out into the field. The chosen techniques were successful because they allowed the team to build empathy with the informants, which meant the informants went from being shy to sharing their experiences with great detail and enthusiasm, recalling not only what had happened but how they had felt. It did not take long for the team to perceive great potential in these experiences, and to understand them not just as experiences but as stories. Classic storytelling elements were easy to identify in their conversations with informants: there was a main character trying to achieve a goal, an antagonist and a setting in which a series of events took place. The narrator was also an important element, as he or she told the story with great emotion and authority. These elements will be easy to spot in the stories that will appear in further sections.

These powerful stories convinced the team that the project was not just about what the informants were saying, but how they were saying it. Their role both as narrators and characters showed they were not passive actors trapped in the country’s healthcare system; instead, they were always making conscious decisions to improve their current situation and they even wanted to share these decisions. This way the team understood this project was about communicating these stories, guaranteeing they reached a wider audience and suggesting their power to lead a transformation from a process-centered organization to a human-centered one as will be discussed below.

Since patient experiences told through their stories had become such an important part of the project, the team decided to take a step back and review the use of stories in healthcare contexts. They found out that The British Medical Journal The Lancet published a report wrote by Helen King (2014) which suggested that healthcare systems were still unable to truly comprehend the contexts in which patients lived. Because of this, the journal called for refined methods to better understand these contexts, such as qualitative methods and, more specifically, stories. The importance of medical histories and individual accounts of illnesses and symptoms show that stories are already present in healthcare and medical contexts.

There are several reasons why stories are relevant evidence in healthcare and medical contexts. First, stories create empathy. They allow us to understand that other people will experience health services differently, or in other words, that there is not just one way in which these services are experienced. Empathy is also important because it is easier to relate to an individual than to an abstract group (think “Maria” or “Juan” rather than “patients” or “users”), and because content that is emotionally touching can be more enticing than plain data. Second, humans are accustomed to thinking in story terms, so they are more likely to retain information that was structured as a story. This means the use of stories need not be limited to discussions between researchers; researchers can use them to express the results of formal investigations in a way that appeals to different actors, including stakeholders, doctors, patients, policymakers, companies and even politicians. Finally, stories as relevant evidence in healthcare have encouraged organizations to design experiences rather than products or services. This has not been an easy transition, since it requires deep organizational changes as the creation of a new area or restructuring internal processes impacting operational and behavioral levels, or in other words, a true change of mind and heart.

Indeed, the benefits of narrative research are being identified and praised across this field. Stories have become a frequent topic in healthcare innovation, so medical actors as well as consultants and designers can easily access it via conferences, TEDx events, web tutorials, and case studies such as the present one. Additionally, several institutions such as hospitals, insurance companies, laboratories, governments and universities are actively encouraging the use of human-centered design in healthcare. In terms of hospitals and clinics, the San Joan de Deu Hospital in Barcelona is worth mentioning, for the creation of its Innovation Department almost ten years ago. In the United States, Mayo Clinic and Cleveland Clinic are just as pertinent, the first for being a pioneer in this whole process and the latter for organizing the annual Patient Experience Summit, an event that brings together patient experience leaders, healthcare CEOs, innovators, policy makers, stakeholders, industry experts and patients who are committed not only to the patient experience, but to the experience of other actors that may be found in health systems, from nurses to pharmaceutical companies. The reason for this is that listening to and ensuring the wellbeing of these actors will inevitably have a positive impact on the patient experience.

All this previous work was considered by the research team when it decided stories were going to be the main vehicle for transformation in this project. Just as Sir Isaac Newton humbly admitting his success as scientist was because he was standing on the shoulders of giants, so the team was thankful for all that had already been done in terms of narrative research in healthcare. However, convincing the client of the importance of qualitative methods and ethnography was one thing, but using stories and narrative research to communicate results was another. While on fieldwork, the team decided that decision makers needed to be invited into the field and attend the conversations with informants. The logic here was that it would be easier for the client to understand the power of stories if it witnessed them first-hand, as opposed to receiving them on a sheet of paper or a presentation. It was about showing rather than telling what the users were experiencing and feeling when interacting with their services. However, the team suggested the client should be prepared before heading out, so a few instructions were given here regarding proper behavior and dress code.

RESEARCH FINDINGS

To remain relevant and impact users, healthcare providers must go beyond healthcare

The team noticed there were elements in the informants’ contexts that had a tremendous impact on their healthcare experience, even when these elements were not directly related to health, such as the education and socioeconomic status or the mobility in each city. Thus, POP had to go beyond healthcare and become more context-sensitive in order to positively impact its users. The client’s first reaction was to reject this suggestion, since it could not understand why the research team was proposing something as idealistic as providing users adequate healthcare, while addressing their socioeconomics needs a well. However, the goal here was POP and the team to sit down and negotiate and redefine what was under the scope of the POP. It turned out there was a lot to be done once the informants’ contexts were taken into account:

Like many bogotanos, Gloria wished traffic in the city would be better. This particularly bothered her whenever she had to visit her EPS POP, which at least was every three months, just to receive a printed medical authorization to get a medical exam and thus keep track of her chronic illness. She could not understand why she could not receive this authorization by email or why a single printed one could not apply for several exams. She told the research team it took her almost two hours to get to the nearest POP medical center, and that the transportation cost represented a huge impact in her household’s economy. She confessed they were even thinking about getting a car, which until now had never been one of their priorities.

Pablo’s stories also show the importance of taking context into account. Due to a difficult childhood, Pablo is illiterate. Although he was able to get a job as a teenager and paid for reading classes, he admits he still has trouble understanding what he reads. When Pablo was diagnosed with diabetes, his doctor gave him many brochures and other information, so he could understand more about this condition and what he could eat. After he gave him the information, the doctor gestured he could leave and Pablo felt too uncomfortable telling him he was unable to fully read.

These examples show that thinking beyond healthcare did not imply POP had to address all of its users’ needs. They do however show that POP should consider contexts to make its healthcare services more compatible with users’ socioeconomic conditions. This meant the company had to take an active and reactive stance rather than conceiving itself as a passive actor trapped in an unalterable context.

Additionally, by becoming context-sensitive, POP understood the importance of intervening different contexts differently. For example, user needs in Bogotá, Colombia’s capital, were quite different to those of users in Medellín. Since Bogotá is a larger city, users were more affected by distance and traffic, implying POP had to make its services more accessible so users would not have to cover long distances. Thus, a higher degree of fragmentation was suggested for this city. Meanwhile, users in Medellín did not seem to have this problem, but most of the informants did complain about the waiting time before they were able to see a doctor. So rather than fragmentation, the issue here was increasing agility.

The users’ contexts turned out to be a significant area of opportunity that would have been left out were it not for the informants’ stories. When informants were asked to narrate an experience with POP, they did not limit themselves to the moment of interaction. Instead they mentioned other details that at first seemed irrelevant but really were not, such as the time they had woken up that day, or how long it took them to get there, or the money they were (or were not) prepared to spend that day. By listening and considering their contexts as valuable evidence, the team ensured POP was on the right track to becoming a user-centered company.

User stories question how quality of service is defined and measured

When it comes to the evidence that decision makers use to improve care, statistics and quantitative data tend to be more relevant—or located higher in the hierarchy of evidence—than stories and anecdotes. However this is starting to change. Throughout the past decade, researchers, policy makers, patient programs and other actors involved in healthcare have felt what some have called an overreliance on numbers. They have also challenged the “doctor knows best” paradigm, by giving similar or equal importance to the patient’s perspective. All this has resulted in an increase in narrative research in healthcare, not as replacement but rather as complement to the scientific medical research that has historically been carried out. Regarding this case study, the research team could tell POP still had this overreliance on numbers, specifically when it came to understanding and measuring the quality of their services.

Ever since Colombia’s healthcare system was reformed in the 1990s, the quality of the service provided by EPS, and whether it has improved or worsen, has been at the center of the discussion. While some experts suggest it is quite clear quality has decreased, and that this is due to private companies always attempting to optimize their profit and minimize costs, others argue quality is a highly subjective concept and very difficult to measure. In this context the research team saw an opportunity to position stories as powerful evidence when it came to measuring quality—and even more so when realizing the way POP was measuring it was insufficient:

POP understood there was a lot to be done to improve the service, but it was very proud with some of its indicators. For example, the EPS had data to show they were very efficient solving their users’ questions and needs over their phone. However, after listening to stories such as Martina’s, who tried to get in touch with POP during months until finally deciding to go to a medical center, the research team did exactly the opposite. When informing POP about these cases, the company was confused and argued their data showed they had an excellent service via phone. It turned out that the way they were measuring how good they were over the phone was very limited since they only took into account the duration of the calls. Average call duration was definitely not a good indicator, as they did not consider whether the user’s issue had been resolved—or, like Martina, how many times the user had called before they actually answered.

With numbers and averages, negative experiences were being hidden by positive experiences, and little was being done to improve (or even listen to!) the negative ones. These were just being regarded as data that was affecting the overall average, but not so much so as to inquire and intervene.

By listening to singular stories, POP was reminded of the importance of going beyond averages in a context as emotional and critical as healthcare. It was not easy for the client when the research team suggested singular stories revealed a much more pessimistic account of quality of service than the data they were accustomed too. The point here was not to completely replace how quality was being measured, but to use stories and qualitative evidence as valid input for quantitative measurement systems. It was about suggesting qualitative and quantitative information could and had to be integrated to understand the user experience.

IMPACT

CONCLUSION

As ethnographers and designers working with business organizations, a challenge that we are constantly facing is proving the relevance of our research methods and results and explaining how this relevance is different to that of other types of evidence. In the service sector, decision makers want evidence that allows them to evaluate their organization internally and externally, which is why the key performance indicators (KPIs), satisfaction metrics and other quantitative customer experience indicators are permanently being implemented. But what happens when these organizations are operating in very humane and highly emotional contexts, such as healthcare? How can evidence obtained by qualitative means complement this need for constant evaluation, while generating additional value?

Throughout this case study it has been shown how a research team argued for the possibility of stories as valuable evidence in contexts such as healthcare, where organizations that are trying to provide broader and more efficient services should consider user stories as input for decision-making.