Health literacy and shared decision-making in predictive medicine — professionals’ perceptions and communication strategies

In the following, the findings and implications will be discussed in the light of previous research and existing literature. With this work’s overall aim to contribute to promoting HL of people confronted with disease risk and to support SDM in predictive medicine, there is a need to critically reflect whether the implications derived from the results are suitable for operationalization and transfer into practice — are the suggested approaches appropriate to support HL and SDM in predictive medicine, especially with respect to their practicability and their effectiveness? What does previous research indicate with respect to the implications derived? To address these questions, the benefit of tools in medical practice as well as the effectiveness of incorporating communication and interaction skill training into medical education should be critically discussed.

Communication tools and medical training as suitable for HL and SDM promotion in predictive medicine

Recommending tools such as prompts, checklists, handouts, and explanation instruments can only be fruitful if they can be incorporated into medical practice effectively. While there is a lot of research on instruments to assess HL, there is no systematic evaluation on how to promote HL or SDM in predictive consultations in particular. However, there are a few studies that address questions about whether it is reasonable to offer communication tools in medical encounters, and whether they show a positive effect on patient’s HL and/or the SDM. An interview study investigating HCPs' perceptions with regard to communication and SDM with patients with limited HL in the palliative setting revealed that teaching communicational skills and using tools in consultations were concepts that effectively supported HL and SDM (Roodbeen et al. 2020). A review on the effectiveness of question prompt lists in general medical consultation, in terms of patients actively partaking/asking questions in consultations, showed that more content was shared in consultations when using such a tool. However, the quality of the consultation or the effect of a question aid on the HL of patients was not evaluated (Sansoni et al. 2015). In addition, using tools to visualize risk probabilities and to introduce possible outcomes to patients is recommended for use in a trusted environment and for informed choices about disease risk (Paling 2003). With tools potentially being an effective measure, HCPs' resources to implement them need to be considered. The work environment needs to provide structures for the use of tools (e.g., management support, time, coaching, supervision, etc.).

With regard to our recommendations for medical training and further education, we wish to discuss (a) the potential of teaching-to-practice transfer in general, and (b) the benefit of training and education for HL and SDM promotion in particular. Participants wished for input on risk communication, SDM, and patient information. But even if the curriculum of medical studies would cover these areas, there is the risk that input on communication, interaction, and mediation skills is given little priority by medical students, considering the massive amount of material to be learned and the biomedical focus of the curriculum. Our participants’ engagement with these subjects possibly correlates with their specification in predictive medicine and their work at an early diagnostic center. Yet, an educational concept focusing on competencies in the named areas could be beneficial for medical students, preparing them for individual-sensitive communication and SDM. To our knowledge, there are no evidence-based teaching concepts for the training of HL competencies in HCPs, nor have there been investigations on how professionals manage to incorporate acquired competencies into their medical practice (Lippke et al. 2020). There is, however, a study showing that teaching risk communication and SDM skills in clinicians is effective, meaning that participants engaged more confidently and that they showed a higher objective knowledge on SDM and risk communication after having undergone some online teaching (Hoffmann et al. 2021).

There are theories on the practice transfer of learned contents and thereby on the effectiveness of further education and professional training. Literature primarily discusses the learning–practice–transfer in a business educational context (Tonhäuser 2017). Yet, general theories can be transmitted to the medical practice as well. The theory of identical elements by Thorndike and Woodworth (1901), for instance, suggests that in order for learned material to be translated successfully into practice, the learning and application situation need to be as similar as possible (Woodworth and Thorndike 1901). So, when wanting to sensitize HCPs in predictive consultation for both the informational and emotional needs of patients and relatives, communication simulations need to replicate a patient–relative–HCP interaction as truly as possible to the original. Experiences shared in this study could serve to replicate sample scenarios, e.g., by creating case vignettes for simulated advice seekers, to confront students or professionals with challenges in risk communication. Behaviorist approaches such as this focus on stimulus–response processes mostly depend on external components of environment. Cognitivist transfer theories, however, centralize inner processes/mechanisms of the learner. With regard to individual problem-solving strategies, general principles are introduced to the learner, who then deductively interprets and transfers these general sets of rules to the practice (Singley and Anderson 1989). Following this theory, introducing general information on aspects such as fear or stigma to (medical) students and HCPs, may enable them to transfer this knowledge into their practice. Grounding on these and other theoretical approaches, Tonhäuser (2017) summarizes three categories that determine a positive learning–practice–transfer process: personal factors (motivation, volition, cognitive capacity etc.), organizational factors (such as supporting colleagues and superiors or application opportunities in the workplace), and measure-specific factors (e.g., similarity of learning material to practice reality and applicability). Simplified, this means that teaching materials need to be target group-oriented, applicable, and close to reality. The module-box for the development of culture-sensitive communication trainings in predictive and preventive medicine by Lorke (2021) offers one possibility for a complementary conceptual framework, empirically covering patients’ perceptions in the context of health, risk, and culture.

When delving into the literature about medical education and HCP training on HL and SDM, ‘professional health literacy’ is a central term one may come across. The concept includes the competence of a HCP to communicate and listen in a way that centers the patient’s individual interests (Lippke et al. 2020). There is a reciprocal effect implied, demanding health-literate professionals in healthcare in order to provide an environment to support a patient’s HL (Mullan et al. 2017). It is emphasized that a health-literate interaction with patients should be taught in medical education and training, and that teaching communication skills may enable HCPs to appraise and respond to their patients’ HL (Lippke et al. 2020). Educational concepts that are considered beneficial in teaching HL competencies of HCPs are, for instance, interactive communication loops (Schillinger et al. 2003), motivational interviewing (Miller and Rollnick 1991) or the health action process approach (Schwarzer et al. 2011).

Previous research and theoretical concepts on implications

We address the duality of risk communication respecting factual and emotional aspects that need to be considered when communicating about disease risk; also, emphasis is placed on the requirement for predictive consultations to be individualized and preference-sensitive, incorporating previous knowledge, fears, and needs.

The two-levelled approach of addressing facts (standardized) and feelings (individualized) in a medical consultation has already been addressed by others. Studies have shown that emotions often overweigh statistical aspects in decision-making processes and therefore need to be taken seriously in medical encounters (Holmberg et al. 2015; Lorke et al. 2021). Recognizing and replying to emotions potentially creates an environment for more productive interactions. Respecting emotions as valuable in decision-making eases the decision-making process and comforts people in their choices, reducing relational conflicts (Gengler 2020). Meeting the emotional element in medical encounters is also considered to be beneficial with respect to people’s HL (Roodbeen et al. 2020). With predictive medicine being primarily grounded on statistical and numerical information, a balanced risk communication is needed, considering facts and feelings individually. Kaldjian (2017) gives valuable focus on the duality of communication in healthcare by discussing different concepts of health in SDM processes. He opposes the biostatistical concept of health (such as absence of disease, objective, value-free) and the well-being concept of health (such as value-oriented, socially determined, individual-specific), arguing that attributes of both systems need to be negotiated in SDM processes, where care goals have to be identified individually (Kaldjian 2017). Chirchirez and Purcărea (2018) go beyond encouraging HCPs to be trained in incorporating feelings of patients, but to analyze and consider the complexity of their mindsets, emotions, and reactions to “[…] diagnose not only the health state but also the patient’s typology level [meaning the set of a patients’ personal characteristics], their cultural and mental state.” (Chichirez and Purcărea 2018). We share the idea that medical encounters should be a sensitive, nurturing environment where beneath the communication of facts, personal issues, and concerns are integrated for effectively promoting HL and SDM. Going beyond this, we suggest encouraging HCPs also to analyze and consider their own mindsets, emotions, and cultural and mental state. This would be a prerequisite for critically reflecting on one’s own fears, values, and preferences, since it has been shown that it is hardly possible to present decision-relevant medical information in a neutral manner (Molewijk et al. 2003). Moreover, it would be a means to overcome the strict separation of 'physicianhood‘ and 'patienthood‘, allowing for truly 'shared‘ decision-making (DasGupta and Charon 2004), since it can be argued that in medical encounters, not only the patient has emotions and culture (Napier et al. 2014).

We consider stigma, fear, and previous knowledge to be potentially relevant for predictive consultations. Conditions affecting the mental state (e.g. Psychosis or Alzheimer’s disease) are especially stigmatized. With predictive procedures alone being a potentially fearful event (Chiolero 2014), needing to deal with health-related stigma or fear may facilitate negative health outcomes (Jessen et al. 2014), less participation in healthcare services in general, and preventive measures in particular (Kane et al. 2019). Being sensitive towards what is known about or feared about a disease may help to counteract misconceptions. This reciprocity of risk/disease perceptions and health outcomes implies the importance of understanding factors such as stigma, fear, and previous knowledge in predictive consultations. This consideration interrelates with the above mentioned ‘risk of knowing’ which is being given credit by the controversial debate on potential harms of risk prediction and ‘the right not to know’ in predictive medicine. In genomic research and the prediction of life-altering diseases for instance, ethically highly relevant impulses with regard to aspects such as individualized communication, patients’ autonomy, and normativity in healthcare are contributing to the mentality of future healthcare (Andorno 2004; Berkman and Hull 2014; Cook and Bellis 2001; Davies and Savulescu 2021).

When recommending an opportunity-oriented communication style (e.g., using imagery language or practicing empathy), questions for communication strategies that have proven to be effective in predictive medicine arise. Although there is literature on communication in medicine in general and on concepts such as individualized and preference-sensitive communication, publications rather indicate research desiderata than empirical evaluation of communication models with practical implications (Balducci 2014; King and Hoppe 2013; Koul 2017). There is, however, evidence concerning the use of graphical images in medical consultations showing that patients who saw explanatory images when being consulted about disease were more satisfied with the encounter (Vilallonga et al. 2012). Complementing the use of graphical images, imagery language (metaphors) may be a relevant tool for explaining disease risk. Schwegler (Schwegler 2021) has described the risk consultation encounter as a novel communication genre that confronts both advice seekers and HCPs with new and particular challenges. Future research on HL and SDM in predictive medicine could therefore benefit from linguistic approaches, analyzing the effectiveness of imagery language in predictive encounters for patients and HCPs alike.

In order to operationalize this study’s results, deductive concepts and practical tools integrating the abovementioned implications should be developed, introduced to patients and HCPs in the predictive practice, and systematically evaluated — most preferably using a participatory research approach. Respecting the idea of medical reality being co-created by patients and HCPs (Cherry 1996), previous research on patients’ perceptions (Harzheim et al. 2020; Lorke et al. 2021) should be included in conceptualizing tools and teaching material.

Strengths and limitations

Due to the heterogeneity of HCP’s specialty (e.g., CHC vs FBOC) and the varied data corpus (more surveys than interviews), an overarching data analysis, without the intention to provide indication-specific findings, was conducted. The focus was based on identifying similarities across clinical fields, so that early predictive procedures in general may benefit from the findings. The sample size is adequate for the research question, the study design, and the given project resources, following the principles of purposive/theoretical sampling (Corbin and Strauss 1990). This study’s sample allowed for HCPs to share experiences and views on the topics of interest, and for deriving theoretical approaches and orienting cornerstones for further research. However, all participants worked at specialized early prediction centers and therefore were sensitized to the topics addressed. Investigating the perceptions of HCPs consulting about risk in less specialized environments might reveal insights which a broader audience in predictive medicine could relate to.

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