Introduction

Improving the health of people has been one of the main purposes of the broad field of health promotion (Roaldsen et al. 2022). Patient education has been used to achieve this aim (Nutbeam 2021). Defining patient education depends on biomedical and technological advances, the cultural differences of a population, and the socioeconomic policies of each country (Bridges et al. 2010). This study adopted the health education (HE) theoretical framework to define patient education. HE emphasizes the teaching and pedagogical strategies that health professionals provide to patients – and, as of recently, to caregivers (Epstein and Street 2007) – on the health–disease process to improve their lifestyles (Mbah et al. 2021; Pueyo-Garrigues et al. 2019).

Lorig and Holman (2003) claim that HE emerged in opposition to the paternalistic model of health care, in which patients were defined as passive subjects of health decisions made by clinicians. When health care began to focus on respecting patients’ preferences, needs, and values, HE began to gain momentum. HE was also promoted by several studies finding that patient-centered health care improves health outcomes (Drake et al. 2022). Supporting patients in making informed decisions, changing behavior, and gaining adherence are considered fundamental to HE (Petersson et al. 2022). Based on the Patient Health Engagement Model (Graffigna and Barello 2018), Bigi (2016, 2021) argues that engagement is a gradual process whereby patients progress through several phases, from vulnerability to awareness that their health condition is part of their life course. In this sense, Bigi places engagement (i.e., a patient’s positive attitude toward developing autonomy to manage their disease) as a prerequisite to decision making, behavior change and adherence. Thus, it seems that patients who are better informed may be more equipped to actively participate in decision-making and change their behavior because they are more willing to identify unmet needs, thus improving their confidence and sense of purpose (Jacob et al. 2022).

Despite the need to place patients at the center of health care actions, many HE programs have been designed by medical experts in hospital contexts (Baur et al. 2018; Dogba et al. 2019; Yu et al. 2016; Ferreira et al. 2021). The evaluation of HE programs that involve patients and caregivers in the design process outside of hospitals has received little attention. Few studies have explored HE programs aiming at informing patients/caregivers from an evidence-based perspective and considering their opinions on how information transfer should be conducted. Therefore, understanding how HE promotes engagement from this participatory perspective remains a gap in knowledge.

The present study aimed to qualitatively explore, using a responsive evaluation model (Stake 2011), the design of an education program called Health Vector. The program targeted patients with chronic noncommunicable diseases (CNCDs), caregivers, and health professionals within the context of evidence-based medicine (EBM) and information transfer. The research questions were as follows: What did this HE program involve? How do stakeholders who participated in the program talk about the positive aspects and challenges of this experience?

Methods

Setting

Health Vector was an HE program that began in late 2018 in Bogota, Colombia. It was financed by local government resources, approximately 1.5 million dollars, to strengthen the policy of knowledge transfer to the population and thus improve health. The program aimed to address the fact that patients/caregivers sometimes adopted health practices not informed by the body of evidence. This problem limits the evaluation of the risks and benefits of different options (Hoffmann et al. 2014). Health Vector was led by a team of researchers from two local hospitals and a national institute of health. From November 2018 to June 2021, the first phase of the project took place, and we were involved as external collaborators to qualitatively evaluate this phase.

The first phase involved participatory design, which used the approaches of EBM, shared understanding of medicine (SUM) and information transfer, through workshop activities (i.e., panels) and participants’ training in EBM. The panels consisted of meetings of patients, caregivers, and health professionals to present, analyze, discuss, and make agreements about the relevance of 527 evidence-based recommendations (EBRs) that patients/caregivers with a CNCD should practice to improve their health outcomes. Participants prioritized and reduced the EBRs to 40 messages that would then be disseminated to patients/caregivers through different media channels (e.g., emails, mobile messages, print-outs, and web pages) in a second phase of the program (See the example illustrated in Box 1).

Box 1. An example of the prioritized EBRs

Chronic Obstructive Pulmonary Disease (COPD) and physical exercise

Performing supervised exercise routines will help the patient improve their breathing, mental health, and physical and metabolic state.

Who should exercise? All patients with COPD with no exacerbations in the last 6 to 8 weeks should exercise. How should patients with COPD exercise?

Personalized routines should be performed for at least 30 minutes a day, 5 days a week.

It is recommended that they perform these routines in pulmonary rehabilitation programs organized by institutions, with which they can define their personalized exercise plan.

Sessions held within an institution should be supervised by health professionals.

Sessions at home should be accompanied by a caregiver.

Remember to guide the patient in following their routine. Engaging in continued exercise at home will improve their quality of life.

Good practices for caregivers: Consult with a doctor about exercise programs and pulmonary rehabilitation for the patient. Use timers to ensure that the patient complies with the minimum time for their routine. After finishing the program, guide the patient in exercising at home.

What is the evidence? The results of 31 studies show that patients with COPD who actively participate in exercise programs significantly improve their quality of life and exercise capacity. Eleven of these studies show that such patients improve on the following variables* (Measurement performed with the Chronic Respiratory Disease Questionnaire: Dyspnea, Fatigue, Emotional Function, Activities of Daily Living).

Where does this information come from? 1. D. Londoño Trujillo et al., Guía de práctica clínica basada en la evidencia para la prevención, diagnóstico, tratamiento y seguimiento de la enfermedad pulmonar obstructiva crónica (EPOC) en población adulta. Acta Médica Colombiana; Vol. 39 Núm. 2 Supl. 3 (2014). 2. Lacasse Y, Goldstein R, Lasserson T, et al. Pulmonary rehabilitation for chronic obstructive pulmonary disease [Systematic Review]. Cochrane Database Syst Rev. 2009. Cited on June 21, 2021. Available at: https://bit.ly/3vONGq6

Study design

This study adopted an exploratory qualitative design because the objective of the research was to understand the experiences of the participants (Hayes 2022). The research design was also based on the theory of responsive evaluation (van Heijster et al. 2020). Therefore, we sought to understand the merits of the educational program design.

Participants and data collection

Patients, caregivers, general practitioners, specialists, program designers, and funders who interacted directly or indirectly during the training sessions and the panels participated in this study. Purposeful sampling was used to select participants. They described their experiences and perceptions during the development of the program design. Twenty-one semistructured interviews and six nonparticipant observations of the training sessions and panels were conducted, and a documentary analysis of the 40 prioritized EBRs was conducted from April to October 2021. The interviews lasted an average of 37 minutes and were videotaped and transcribed verbatim to maintain the fidelity of the narratives. The observations lasted an average of 3 hours, and the researchers kept field notes about what happened in the training sessions and panels.

Analysis

The information collected was analyzed with the interpretive approach of thematic analysis. This followed three steps: the initial coding of the information; the review of the codes by the research team; and the organization of findings into categories, themes, and theoretical narratives (Cohen et al. 2017). For the coding of the information, we used NVivo 12® software. A researcher reviewed each of the documents in detail and assigned initial codes to the textual units with meanings relevant to our research interests. Then the other researchers reviewed the justifiability of the interpretations in the first coding. For this, the codes and their text units were exported to a spreadsheet. During 10 sessions (average length = 3 hours), we discussed whether the interpretations of the codes corresponded to the meanings of the texts. In cases of disagreement, we debated the arguments for and against the interpretation and proceeded, by consensus, to accept, adjust, or eliminate the code. In addition, the first approaches to the theoretical narrative were applied at this point through the creation of memos, which included marginal comments, opinions, or possible explanations of the phenomenon studied (Silverstein et al. 2006).

Next, the codes were grouped into categories and themes during two 3-hour sessions, with the participation of all authors. To do this, we evaluated the narratives associated with each code based on the research question, and we grouped them according to their most significant characteristics. In total, 13 categories emerged and were organized into three essential themes.

Results

We identified three themes from the participants’ experiences in working collaboratively on prioritizing EBRs in the training sessions and on the panels: background, values, and issues. The themes revealed the different assumptions participants had about the goals, processes, and possible outcomes of the educational program.

  1. (a)

    Background

This theme covered three categories: concerns, expectations, and meanings. In these categories, participants identified the reasons why this program was relevant. The theories used by the designers of the program were introduced to frame it, while at the same time explaining the expected future results. Some participants were concerned about the historically complex problems of educating patients about their health. They recognized the absence of successful mechanisms to transfer the information presented in clinical practice guidelines to the citizens of Bogota.

Participants were also concerned that patients/caregivers were not included in the traditional processes of scientific information transfer. They reported that these processes have paid little attention to the beliefs, preferences, and values of patients/caregivers. For example, eating certain types of foods with a bad taste can cause a patient to not follow certain scientific recommendations. Consequently, the designers of the program placed the prioritization of EBRs in an epistemological paradigm that is part of the spectrum of EBM known as SUM. Under this approach, doctors and patients/caregivers should make decisions jointly considering the beliefs, preferences, and feelings of all parties.

The designers of the program conceived the need to convey information on recommendations of healthy practices to certain groups of patients/caregivers so that they would make informed, evidence-based decisions with the goal of promoting their empowerment. They started from the idea that it is necessary to influence the knowledge of patients/caregivers on the available evidence to obtain the best outcomes, assuming that gaining new knowledge can change health behaviors. In other words:

“The first step is the issue of knowledge, which one knows has few real impacts, but it is a necessary step, that is, it is essential. In other words, one cannot change a behavior if one does not have the knowledge of what you’re going to do, of what you’re going to have to do […] So when one, say, says that this knowledge has the power to turn it into a behavior modification, that is where the methods come in, too, to do it, then evaluate if the person has adherence, that is, [if] they are already doing what they learned or knew.” (I03)

Although some participants declared some skepticism toward these assumptions, the program designers planned strategies that would allow a better transfer of scientific information and thus influence the knowledge, attitudes, and practices of patients/caregivers. In this sense, the participants expected that conveying the EBRs could generate a significant long-term impact on morbidity and mortality rates from CNCDs. Some also mentioned that they expected a transformation in the dynamics of the doctor–patient/caregiver relationship. For example, patients are empowered with scientific knowledge and thus can “challenge doctors in decision-making” about their health.

To achieve this, the program designers implemented training on EBM and then ran the panels to prioritize the most important EBRs. In doing this, they wanted patients/caregivers and general practitioners and specialists to have a dialog to obtain different points of view on the usefulness of EBRs.

  1. (b)

    Values

This theme included the main aspects that the participants perceived to be achieved through the trainings and panels for prioritizing the EBRs. It covered six categories that denoted learning, transformative actions, methodological successes, and relevant recognitions of the local reality through the experiences of those who coped with CNCDs in the framework of the Colombian health system.

All stakeholders reported that a space of interaction in which different perspectives converged had been fostered. For the patients, for example, the discussion held in the panels allowed them to converse with medical specialists about the adequate performance of certain health practices such that, supported by the evidence, they could be modified. Patients also highlighted that patients should not be made to feel obligated to adopt EBRs, as if through scolding, in complying with certain decisions regarding the management of their disease. The following account of a patient explains it as follows:

“So then it was not imposed, it was not: ‘I am a doctor and I know more than you.’ No, that topic never crossed anyone’s mind, and everything was thoroughly discussed, very calm, the Vector talks, the moderators, even though they also said [...]: ‘Ah no, I know more than you and you know less than I do there, since I am the doctor.’ No, they as doctors evaluated things clinically and one, as a patient, could also express their point of view without being involved in the clinical issue, so the most important conclusion is that you have to have a lot of empathy and a lot of trust in the treating doctor.” (PC02)

Another notable aspect was the interaction between specialists and general practitioners in primary health care. These individuals expressed in the panels the fragmentation between levels of care of the health system and felt that their interaction was crucial to understanding how decisions are made at different levels of health care. For primary-care physicians, the richness of the panels was found in the knowledge of experts in diverse subspecialties from different institutions (e.g., cardiology and pneumology), which allowed them to recognize ways to review and apply clinical practice guidelines.

Likewise, it was valuable for the participating physicians to see the interest shown by patients/caregivers in the performance of certain health practices. In the same sense, the recognition of the importance of the role of the caregiver in the process of treating diseases was also mentioned as a learning process for health professionals. In traditional consultation scenarios, the relationship can be reduced to the doctor and their patient, while the caregiver can be isolated from this relationship. The role of the caregiver in the panels was also identified in the field observations.

According to some program designers, another achievement was that many patients demonstrated management of concepts and ideas associated with EBM, making contributions from notions such as cost-effectiveness and the quality of the evidence. This was achieved by training the patients about theories and positions they were going to encounter in the panels. However, to encourage the participation of patients in the panels, the role of a moderator was necessary to translate the technical language of the EBR. With this, it was possible for everyone to discuss the prioritization, ensuring the exchange of knowledge and attitudes in the panel. The moderator also went through a learning process, since effective participation of all the actors was facilitated only to the extent that it was ensured that they understood the issues to be worked through in the panel.

  1. (c)

    Tensions

Some issues related to training and the panels were discussed. Four categories emerged under this theme: conflicts, barriers, difficulties, and challenges. Although the categories seemed to express certain similarities and while there may have been overlapping aspects, each category encompassed a different dimension of the problems experienced. For example, an issue arose when the type of EBR that needed to be prioritized was discussed. Some patients demanded including nonpharmacological EBRs (e.g., “Performing supervised exercise routines will help the patient improve their breathing, mental health, and physical and metabolic state”) because they stated that the treatment seemed to be focused only on pharmacological aspects while neglecting follow-up and understanding of its impact on the disease. Although it may seem that these recommendations are obvious, patients felt that it was difficult to understand and apply them.

Some program designers recognized that the lack of evidence on nonpharmacological recommendations is linked to the fact that the pharmaceutical industry is responsible for generating a significant number of scientific studies on pharmacological management. Thus, fewer articles focus on nonpharmacological treatments. With these considerations, it was indicated that the absence (or weakness) of evidence does not necessarily mean that nonpharmacological EBRs should be discarded. In contrast, in some panels, it was recognized that prioritizing nonpharmacological EBRs was a powerful proposal that set up a counterhegemonic stance, thus providing a useful alternative for the patient while supporting the adoption of new paradigms in the management of CNCDs. At the end of the panels, the ratio of pharmacological to nonpharmacological EBRs was approximately 3:1.

On the other hand, there were differences between the interests of physicians and those of patients/caregivers regarding the purposes of the panels. For example, both health professionals and researchers indicated that some patients inquired about their personal treatment during the prioritization of the EBRs, disrupting the dynamics of the discussion in the panels and generating a disconnected pursuit of their primary objectives. Even so, and given that health professionals perceived the objective of the panels differently, some of the patients’/caregivers’ doubts were not addressed in depth, and the discussion stayed within the bounds of EBRs, as initially stipulated. Thus, the participation of patients/caregivers was directed toward understanding the limitations that an EBR could have when changing a health practice in its context. Additionally, physicians expressed an interest in the proper implementation of clinical practice guidelines, while patients/caregivers prioritized restoring their health.

Another issue for some patients/caregivers concerned the difficulty of understanding the technical language of some EBRs. One caregiver expressed the following:

“... I felt that my participation was not very active because I felt that there were things that I did not get or that my contribution could not be very significant [...] In fact, some EBRs that we looked at were more geared to the doctors than the patients, they could not be oriented to the patient but to the doctor, so I feel that because of that I felt a little disconnected from the process, because they were - as I mentioned earlier - more complex, more specific.” (PC02)

That said, there were aspects of the prioritization of the EBRs which drew the participants’ attention given their implications. Several patients highlighted the need for an interdisciplinary approach for prioritizing and implementing EBRs. This was expressed in requirements such as incorporating a mental health dimension that would recognize the emotional impact that living with a CNCD can generate for patients/caregivers.

Another discussion focused on the importance of the social and cultural contexts of patients/caregivers with respect to recommended health practices. An example of this was an EBR, later excluded from prioritization, that suggested maintaining a Mediterranean diet, which was insensitive to the reality of local gastronomy and was not affordable to the entire Bogota population. Some difficulties accessing certain medications due to complex administrative procedures were mentioned, which could jeopardize adherence to treatment. Insufficient infrastructure and a lack of clinical implements among health providers were perceived as something that could hinder some of the exams that appeared in some EBRs.

Discussion

This study aimed to understand the lived experiences of a group of patients, caregivers, clinicians, designers, and funders of a health education program in the participatory design stage (i.e., training sessions and panels held to prioritize EBRs). The data reveal that stakeholders had different assumptions about the goals, processes, and possible outcomes of transferring EBRs to patients with CNDCs depending on their expectations about the information needed to change the knowledge, attitudes, and practices of target patients. From the findings, we understand that the different assumptions of the different stakeholders about the intervention produced some gaps in this program: gaps in interests, knowledge, and power. These gaps and their possible implications for HE are discussed below.

First, we found a gap between individual and collective interests of the intervention, which was represented in the unbalanced relationship between pharmacological and nonpharmacological EBRs. It was also reported that the large volume of research on pharmacological management could be derived from the particular interests of pharmaceutical companies in increasing their profits. Although nonpharmacological recommendations, such as changes in eating patterns and patient education workshops, have been considered crucial for the management of CNCDs (Ye et al. 2020), in our case, they were addressed less.

We hypothesize that this finding has implications for the hidden curriculum of the HE program. Skelton (1998) states that patient education contains a hidden curriculum that thoughtlessly reproduces particular interests. This finding is consistent with that reported by other authors (Mathew and Clase 2022; Jureidini and McHenry 2022), who have warned about particular interests of economic origin that generate conflicts in the fields of HE and EBM. This interest gap could hinder the learning of patients/caregivers about evidence-based information due to the scarce attention given to nonmedicinal recommendations on healthy practices that are also important for patients/caregivers.

The second gap refers to knowledge of health–disease processes. That is, knowledge about how biology, culture, history, and context improve or deteriorate health in different ways and at different intensities throughout life (Quintero et al. 2016). Specifically, patients/caregivers perceived that EBM training was valuable for recognizing and reflecting on their beliefs, preferences, and values regarding healthy practices. However, these individuals said also that they should have been taught to understand health–disease processes because this would have encouraged their participation in the panels. Other studies have found that knowledge gaps in health–disease processes can negatively influence the way in which patients adopt healthy practices based on scientific evidence (Khatib et al. 2014; Tan et al. 2017). Consequently, the importance of patients learning about the best healthy practices based on evidence and their health-disease processes has been highlighted (Baky et al. 2018; Shim and Hwang 2017).

The last gap relates to the power asymmetries between different stakeholders of the HE program. One of the participants in this study reported that the purpose of disseminating EBRs is to empower patients with scientific knowledge to “challenge physicians in decision-making.” In our case, we found that the participants with greater knowledge had greater decision-making power in the panels to prioritize the EBRs. Knowledge gaps occurred not only between health professionals and patients/caregivers but also between general practitioners and specialists, the latter being the ones at the pinnacle of knowledge. Therefore, the interests that frequently prevailed in decision-making to prioritize EBRs were those who held this privileged position. This does not mean that the other interests were silenced or rejected; they only played a different role in decision-making, more related to explaining their experiences with the recommendation.

The use of knowledge as a tool of power to make decisions in health can be understood in light of postcolonial theory. Eichbaum et al. (2021) explain that medicine has historically perpetuated, intentionally or not, the colonialist mentality that there are superior (i.e., colonizers/knowers) and inferior people (i.e., colonized/nonknowers). Thus, under this approach, knowledge can be used to socially determine how decisions about the health of patients are made. We are not suggesting that the Health Vector program intended to oppress the uninformed. Rather, our findings suggest that although the program adopted a participatory design, at certain points collaboration was not evidenced in practice due to asymmetries of power in decision-making, which were due to differences in medical knowledge.

Yet, if intervention designers assume that informed decision-making should be done through collaboration between doctors and patients, power asymmetries that emerge from knowledge gaps may affect the ability—or likelihood—of patients/caregivers taking part in these decisions. Therefore, conveying EBRs alone could be insufficient in modifying health practices if the power relations between doctors and patients/caregivers (or between doctors of different levels of care) are asymmetric. In this sense, the program would need mechanisms beyond the conveyance of EBRs to balance the power in the doctor–patient relationship.

Using the Patient Health Engagement Model as a lens to understand the three gaps found in this study led us to identify that the next phase of the intervention (i.e., broadly disseminating EBRs to patients) may face a significant challenge of reactance. Reynolds-Tylus (2019) defines reactance as patients’ resistance to persuasive messages to change their behavior, which in turn can hinder engagement, even in the face of evidence. The development of reactance has been partially explained by patients’ feelings that they are losing their freedom by having certain health behavior changes imposed on them. Although patient education is proposed as a way of reducing reactance (Favaretti et al. 2022), providing too much information to a patient can be counterproductive because they may perceive a greater threat to their freedom, that is, an intent to control their daily decisions about their health. This perception may generate resistance and nonadherence. Different stakeholders’ interests in HE and “the asymmetrical nature of interaction between patients and providers” are also suggested to have a close connection to reactance (Bigi 2016).

This connection has some implications for future research of the Health Vector program and other HE interventions with similar approaches. Such implications include (a) an exploration of how EBRs once transmitted to patients/caregivers influence engagement, adherence, and dialogue in doctor–patient encounters and (b) an examination of how involved interests, knowledge, and power gaps affect intervention.

Limitations of the study

Some actors of the Health Vector program did not respond to our invitation to participate in the interviews. Although we do not know their reasons, this indicates that we failed to account for some experiences that could have enriched our findings.