Having health information just a click away brings with it new challenges both for healthcare systems and for the relationships between healthcare professionals and patients.
Easy access can help people be well-informed about their conditions, as well as promoting active participation in managing their own health. However, it is also important to learn how to search, find and, above all, evaluate the quality and origin of health information found in the digital environment.
As patients, we need to learn to be what we call “ digitally engaged ”. And this is a challenge when the amount of information available is exorbitant and the risk of coming across misleading news within the digital environment is very high .
Becoming a digitally engaged patient depends on more complex aspects than just accessing the internet and being able to navigate health information in the digital environment. When we adopt a critical perspective, we realize that collaborating with this engagement is only possible if we discuss the social and cultural aspects that permeate this process .
For example, levels of familiarity with the digital environment (digital literacy) and with health concepts (health literacy) are closely linked to socioeconomic and educational determinants. Furthermore, the relationship between patient and healthcare professional is permeated by a power dynamic that can influence patients’ behavior in the digital environment.
Seeking to understand where the information consulted on the internet is found in the context of the interaction between health professionals and patients, we conducted individual interviews with 30 users of the public health system in the city of Campinas, São Paulo, Brazil. The sample included patients, family members and caregivers, and data was collected between November 2020 and February 2021.
The results of this qualitative study were analyzed and interpreted from a critical theoretical lens, that is, emphasizing the dynamics of power, autonomy, beliefs and assumptions based on the participants’ reports.
The three central themes developed were: 1) Difficulty in becoming a digitally engaged patient; 2) Information searched on the internet is easier to understand; 3) The internet better embraces patients’ vulnerability.
These themes can clarify how online information fills gaps in the “sphere of care”.
1) The difficulty in becoming a digitally engaged patient
Some initiatives to become a digitally engaged patient, such as searching for health information on the internet and asking for opinions or questioning healthcare professionals, are generally discouraged by healthcare professionals themselves. This discouragement appears to be driven by a lack of relational power and a lack of structural power.
The lack of relational power is due to the patient’s lack of technical and formal knowledge in relation to the health professional. This makes it more difficult for patients to be independent and search for information online to understand their health condition.
The lack of structural power concerns disadvantages arising from socioeconomic factors. In this case, patients report resignation, lack of support and a tone of hopelessness due to not knowing how to use the internet or not having access to the infrastructure (connection, equipment and applications) necessary to carry out this search.
2) Online information is easier to understand
Health information on the internet can include videos, photos and images, and appears to be easier to present in a format that aligns with patients’ understanding. Patients commonly report that information on the internet is easier to understand than that provided by healthcare professionals during a consultation.
Furthermore, internet searches can occur before and/or after a consultation with healthcare professionals. These searches are carried out both to help the patient understand what is happening with their health and to clarify information that may not have been very clear during the consultation.
From the perspective of power relations, the use of technical terms or jargon that are not easily understood alienates and alienates patients from health professionals.
3) The internet better embraces patients’ vulnerability
The emotional suffering commonly present when there is a health problem seems to be better supported within the digital environment. Patients seem to feel that support groups and contact with real stories (of overcoming or not) through social networks fill an emotional and support gap that is not always filled in consultations with healthcare professionals.
It seems that healthcare professionals do not pay as much attention to patients’ emotions, and this can leave patients feeling distant and unheard. On the other hand, the internet offers a type of emotional support that people find important when they are facing uncertain health-related situations.
What does this mean for patients?
Finding health information on the internet can be a way to be more independent and become a more informed patient. However, it is not just a matter of individual patient skills, such as having a device to search for information and knowing how to recognize reliable information.
For patients to become digitally engaged, changes need to be made across healthcare systems as a whole. For example, during a consultation, it is important that patients feel encouraged to raise their questions and discuss the information they found on the internet.
It is important that patients are open to learning and able to express their understanding of the information discussed. Likewise, healthcare professionals must create a safe and welcoming environment to encourage this interaction, avoiding interpreting patients’ behavior as challenging or threatening.
Thus, health consultations can become opportunities to explore perspectives, build trust, acquire information and, as a result, empower patients to play an active role in decision-making about their health.
Power relations must be recognized
Power relationships between healthcare professionals and patients will not cease to exist, but they must be recognized. Deepening your understanding makes it easier for healthcare professionals to outline creative itineraries to transform the care space into a place that promotes collaboration and learning.
The communication space within consultations is valuable for exchanging pertinent information and building knowledge. When communication with healthcare professionals is not effective and this space is dominated by tensions and reaffirmations of power, patients tend to feel helpless and turn to the internet even more.
Knowing the enormous variability of information on the internet, it is essential for healthcare professionals to accept that this information is discussed in a safe environment, with active listening, inclusion and empathy. This can strengthen the relationship with the patient, what we call a “therapeutic alliance”. To do this, it is essential to understand patients’ needs and limitations.
Active and individualized communication methods are key to personalizing and making healthcare consultations more effective, taking into account patients’ digital skills and level of health literacy.
For example, the use of concise and simple messages, avoiding medical jargon, individualization of guidance, and the use of the “teach-back” method, where healthcare professionals ask patients to explain what they learned during the Query.
These strategies can help check understanding and identify gaps in knowledge, thus adapting communication to the patient’s individual needs.
Author Bios: Bruno Tirotti Saragiotto is a Senior Lecturer at the University of Technology Sydney and Livia Fernandes is a Physiotherapist and PhD student at the University of Otago