Introduction 

The doctor–patient relationship, which is traditionally based on paternalism and hierarchy, has been significantly changing mainly due to the rising number of patients with chronic conditions and the digital era. During the last decades, the paternalistic interaction1 between physicians and patients has embraced a patient-centred approach, and both medicine and the social sciences started to focus on the importance of questions of control, mutual participation and the new principles of the relationship.2–4

Various models of the current relationship have been discussed in the literature.5 Szasz and Hollender emphasised three basic models, two of them being paternalistic: activity–passivity and guidance–cooperation.6 The active–passive model is based on biomedical approaches and places the physician in total control of the treatment. In the guidance–cooperation model, the physician gives guidelines and expects the patient to cooperate and obey without question. The third model is mutual participation in which the physician makes an agreement with the patient about the treatment, especially in the case of chronic conditions. Emanuel and Emanuel assumed four models of the physician–patient relationship: paternalistic, informative, interpretive and the deliberative models.7

Besides paternalism, another main model of the physician–patient relationship has developed since the 1990s. Charles et al described the shared decision-making model in which both the doctor and the patient are active in the decision process8. Both of them are involved and are participating in the treatment and the decision-making process, and they share information and express their treatment preferences.

Balint introduced the concept of ‘doctor as a drug’, according to which the quality of the relationship supplements the treatment. Thus, if the relationship is good, the prescribed drug or therapy is more effective. The physician–patient relationship works best when the patient receives more time, information and care from the specialist.9

No matter what model we use, the transformation of the new relationship has been catalysed by the digital era. A revolution in information technology in the 1990s led to patient empowerment giving more access to medical information via the internet which eventually started shaping the job of physicians too. First, this meant that some patients became generally better informed and got more involved in the treatment and decision-making.10 11 It is entirely plausible for a patient today to have such a deep knowledge of their condition that it can even exceed the one of healthcare professionals.12

Thomas Ferguson used the expression ‘empowered patient’ or ‘e-patient’ first while creating a manifesto, now known as the e-patient white paper, before his untimely death in 2006.13 The paper was completed by his colleagues and published a year later. According to the definition, e-patients are health consumers participating fully in their medical care. This primarily means collecting information online or by any digital means about medical conditions influencing their own state and their relatives. The ‘e’ can stand for ‘electronic’, ‘equipped’, ‘enabled’, ‘empowered’, ‘engaged’ or ‘expert’.

WHO defined empowerment as ‘a process through which people gain greater control over decisions and actions affecting their health’,14 which signifies a process on both the individual and the community level. That patient empowerment process is said to be based on four elements: (1) patients understanding their role; (2) adequate knowledge acquisition by patients for engaging with their healthcare provider; (3) patient skills and (4) the presence of a facilitating environment.14 In their literature review, Fumagalli et al established that empowerment is the combination of ability, motivation and power opportunities.15

The shifts in the doctor–patient relationship were further facilitated by the appearance of digital health in the 2010s. Digital health has become the cultural transformation of how disruptive technologies, which provide digital and objective data accessible to both caregivers and patients, lead to an equal level physician–patient relationship with shared decision-making and the democratisation of care.16 17 It has helped spread the access to information and the use of technologies in disease and health management.18

Consequently, the ivory tower of medicine has first become more transparent then it is eventually becoming public. The access to medical studies, information, second opinion, peer support and digital health technologies has become more common. However, with only a few exceptions,19 physicians are not trained to be able to use new technologies due to gaps in the medical curriculum and are afraid of the loss of their prestige or power as patients step up.

All these lead to fundamental changes in the relationship between patients and physicians. Our aim was to explore this by observing what relationship empowered patients who are considered opinion leaders worldwide have today with their caregivers, what experiences and beliefs they have about technologies, and how they see the future.

We define and use the term opinion leader empowered patients as ‘individuals who are well versed in a disease either as sufferers or care takers of individuals with chronic disorders and share their knowledge on the particular disease with others.’ Also, ‘a Patient Opinion Leader is a patient that suffers (or has suffered) from (a) chronic disease(s), either mental or physical, and that shares his/her knowledge about his/her condition and treatment on the Internet through blogs, videos, social media or community websites.’20–22

We also attempted to determine whether technologies, the access to it or empowerment are the main driving forces behind these changes.

Methods

Results

We identified four superordinate themes emerging from e-patients’ experiences: (1) impact of technology, (2) the meaning of empowerment, (3) the changing physician–patient relationship and (4) expectations for the future. The list of superordinate themes and connected subordinate themes is illustrated in figure 1.

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Figure 1

The list of superordinate themes and connected subordinate themes.

Theme I: the role of technology in the life of e-patients

Participants expressed that the use of technological tools gives them a sense of safety and social support. Technology helps them monitor their health and keep in touch with their doctors and patient communities. They emphasised that the digital world means connection to the outside world, therefore, online presence for a chronically ill person is decisive.

E-patients use ordinary technologies

The first subordinate theme focuses on technological devices. All participants use digital health technologies that can be divided into two main categories: communication tools (social media channels such as blogs and Twitter, websites, online forums, Open Notes, Skype and WhatsApp) and devices or sensors such as Fitbit, insulin pumps, glucose sensors or self-made continuous glucose monitors (figure 2).

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Figure 2

A summary of technologies the interviewed e-patients regularly use.

‘I am wearing a continuous glucose monitor, which is a sensor that I put onto my skin and goes through my skin and reads interstitial glucose levels every five min. So, I am able to look at my phone and see what my blood sugar is doing, what it has done and where it might be heading. So, it is not only giving me the results but it is giving me trend indications.’ (I6)

Communication and getting information

In this subordinate theme, the practical impact of using digital health tools is emphasised. They use these technologies to connect to the world, share experiences and information with patients, physicians and other experts. Most of them mentioned that a patient’s blog contains important information for providers, patient communities and may be used in medical education too.

‘I contacted about 20 000 patients in the world for many, many different reasons. For me, one of the big things about the social media was the ability to connect to one patient to another.’ (I5)

Experts such as researchers, physicians and patient advocates join some of these patient communities leading to a multidisciplinary point of view in the treatment and social support too. It creates contact with the physician, sending information to and building a relationship with them via digital technology. It can also help make decisions online in real time.

‘I connected with this patient community where I got information and social support, which is important part of the patient’s experience when they’re isolated’ (I3)

Technology provides access to relevant medical information which can be a key factor in the course of treatment, progression and further planning.

‘In fact, two years ago, I saw a scientific article posted. It was a study about a medication that is used for cognition, it’s a cholinesterase inhibitor, and this is used in the dementia patients to increase cognitional awareness and it was a study showing effects in Parkinson’s on gait patterns, about how the person walked. About how taking this medication reduced gait difficulties. This was the study that was published the day before I saw it posted in a group or feed. I had exactly this problem with my gait. So, I emailed that article to my neurologist and asked if he could prescribe this medication. It was used in Parkinson but not for that indication. So, based on what I saw on my Facebook feed, I found information I needed to address one of my main issues. And I told my neurologist about that and he prescribed that medication.’ (I10)

Self-monitoring through medical devices also contributes to deepening knowledge and effective health-sickness management.

Clearly having these tools that let people better track their glucose level, other parameters, and track of what they eat and exercise and other factors that affect their care. That is important. If we are able to, even via e-mail or via some apps, be in closer touch with the providers. (I2)

Discussion

We attempted to outline the views of opinion leader e-patients on the role of technology, empowerment, the physician–patient relationship and their vision of the future. Although many studies have focused on the empowerment phenomenon, the unique aspect of our research is the qualitative approach to the personal experiences and thoughts of opinion leader e-patients.33–35

These patients, who have authority to share their vision of care due to their reach, impact and influence on other patients’ lives, as they are valid sources of questions and issues related to the future, all expressed that the coming decades of healthcare cannot be envisioned without putting technology in the spotlight.

The interviews have shown that the rapid development of technology has fundamentally changed the lives of these e-patients by providing more treatment options and facilitating the management of serious conditions. According to them, technology might be the new hope for reducing costs in care, solving the human resources crisis, and eventually transforming the physician–patient relationship into a partnership.

However, one of our key findings was that e-patients use communication tools and technologies such as search engines, Skype or Fitbit sensors, and they have not mentioned anything beyond the reach of an average consumer, therefore, being technology-savvy is helpful but is not a principal requirement for empowerment. As technology is just one element in this shift, e-patients do not expect their physicians to deal with complicated technologies because, in reality, it is not the case even with the most empowered patients.

Based on our results, proper physician–patient communication and a connection with their caregiver are the key components in the life of e-patients. Bensing et al summarised this in an apt way: ‘Listen to the patients. They will tell you what they want and need’.36 Like Barham et al, we found that e-patients demand more time with their caregivers.37

The relationship e-patients have with their physicians is based on efficient communication, proactivity, the desire for asking questions and the use of technologies. Complementarily, they managed to find physicians who are partners in these. We suggest that these e-patients can serve as role models for patients who are currently not engaged in their own care.

However, as digital health technologies are becoming widespread, easier to use and more efficient, this will probably get more patients engaged in their care as the entry level to the use of technologies will get even lower. By helping physicians interact with patients better, providing means of health and disease management, finding medical information and getting access to patient data, technology has democratised the conversation and might further facilitate shared decision-making.

An e-patient has two main attributes: critical thinking and making informed decisions alone.35 Our interviewees agreed with this, claiming that patients have an obligation to inform themselves about their status and treatment options.

The role of responsibility also defines empowerment. The huge amount of available information enables patients to initiate and make decisions while giving them more responsibility. The foundation of the doctor–patient partnership model is that both the doctor’s and the patient’s performance is necessary for recovery. The doctor’s role is to be an expert advisor, while the patient is an active, responsible ‘coworker’.38

Patients’ rights were established in the second half of the 20th century, and thanks to the empowerment movement, informed consent can now be complemented with shared decision-making with the patient. Charles et al emphasised both the physician and the patient to be involved in the decision-making process and information exchange, both the physician and the patient to express treatment preferences, and finally, the physician and patient to agree on the treatment decision.8 39 In this process, patients have to become more responsible for their treatment.40 For example, the development of patient decision aids has increasingly grown in Spain and currently, there are several of these materials available for patients with different diseases.41

The model of mutuality seems to be ideal for the physician–patient relationship while the fundamental features of practising medicine have not made it possible yet. Technologies only provided the initial motivation to change this and might further facilitate this shift from hierarchy to partnership. A patient-centred care model suggests that providers have to consider patients’ needs, perspectives and experiences; offering opportunities to patients to provide and participate in their care and enhancing partnership2 42 43

Patients’ drive to empowerment lies in finding information and having communities. The interviewees all emphasised that trustworthy medical information (on reputable websites such as the one of their hospital, Mayo Clinic, etc) to be the primary choice before turning to the community. Technology is only the medium that helps build two-way trust that is the basis of partnership empowered patients are longing for.

Our results confirm the importance of education in becoming proactive: 8 of 11 e-patients have a higher education degree. This raises the questions whether the e-patient movement is a privilege for the well educated or it can become more widespread. The difference among healthcare systems can also be a difficult factor for empowerment. For example, the role of the ‘conscious consumer’ in private healthcare systems is obviously greater than in countries with socialised medicine, which might catalyse the e-patient movement.44–46 With regard to the prioritisation and regulation of digital technologies in healthcare, presumably, the more open the healthcare policy is, the more significant the e-patient movement will be.47

Access to information through technology provides an opportunity—one which e-patients are consciously using. In our study, a good example of this is the continuous monitoring of blood glucose levels, providing information, safety and conscious participation for the patient—while the physician’s physical presence is not required for the process. The technology opens a new model of medical treatment in which self-management is in the spotlight.48

The interviewees emphasised that there are many obstacles in the way of empowerment. One of the main issues is accessibility, such as financial and educational disadvantages, which can be hindrances in the process of empowerment. Having health and digital literacy, speaking English, and sufficient financial resources are also essential. Besides the above-mentioned barriers, the importance of motivation, interest and the issues of trust, privacy, security and liability should also be considered.

While participants found the use of technologies advantageous in receiving better care, we have to address how the use of digital health technologies will affect patients’ private information and whether laws such as Health Insurance Portability and Accountability Act of 1996 (HIPAA) can help protect it. HIPAA is a legislation in the USA that provides data privacy and security provisions for safeguarding medical information. The proliferation of health data breaches in recent years caused by cyberattacks and ransomware attacks on health insurers and providers shed light on the issue whether such laws can protect the data of patients.

With the proliferation of digital health, the potential advantages of a preventive, accessible, personalised, augmented and humanistic healthcare system also pose serious threats to the individual and society. We hypothesise that an empowered patient will want to keep control over the use of their data as that is a key part of empowerment and current policies worldwide do not seem to be able to address this properly, except for a handful of examples in Denmark or the USA.49

Empowerment might also increase inequality among patients as those who have the skills to deal with online communication and technologies could get benefits over those who do not. Moreover, opinion leader e-patients are subject to the lobbying of pharma and healthcare companies similarly to their caregivers, which can influence their views.50 51

Due to the above-mentioned phenomena, physicians of the 21st century face serious challenges. Improving knowledge and the adaptation of digital technologies have become crucial aspects of lifelong learning.52 The other part of the challenge is that informed and ‘always on’ patients are emerging who are questioning the fundamentals of medical paternalism, dominance and monopolism.

Regarding the future of the physician–patient partnership, e-patients emphasised that change will rather be cultural than technological. It is in accordance with the new ‘biopsychosocial-digital’ approach to health and disease53; as well as the meta-analysis of Calvillo et al: “current technology already allows establishing the first steps in the road ahead, but a change of attitude by all stakeholders (ie, professionals, patients and policy-makers) is required.25

As care will involve the use of digital health technologies, however, emphasis should be on how these shape the personal relationships patients have with their physicians while receiving care. We also expect to lose the e-patient expression over time as most patients will be empowered.

This study design has limitations though. As being considered an opinion leader is a broad category, and as only participants who speak English were approached, many potential opinion leader e-patients were out of the scope of the study. Also, it is challenging to decide whether patient empowerment is going to be widespread enough to be tested in many healthcare systems and cultures. One might argue that patient empowerment is an option only for privileged, educated patients who have access to technologies and information. There is also an ongoing debate about whether the transformation from patriarchy to partnership will be common or widen the gap between physicians and patients by creating more tension.

The limitations of the qualitative method (IPA) include that the results cannot be generalised because of the small size and the specially chosen sample. Another important theoretical limitation is that this method builds intensively on the interpreting process of the researchers, which means the data arriving to them is already an interpretation made by the interviewee that has to be interpreted by them a second time.

As each of the respondents expressed that it is necessary for reflection on changes in the physician–patient relationship to appear in medical training as well, this opens the way for new research areas. Therefore, we aim to continue our research with the description of the characteristics of the 21st century e-physicians to complement the views of e-patients on the present and the future of providing care.

Conclusion

We can argue that empowerment might have always been missing from healthcare because of the way the ivory tower was structured, and physicians were trained to become the ultimate experts of medicine. Communication and digital health technologies only facilitated the rise of empowerment and probably will further enhance it. However, interviews with opinion leader e-patients have shown that the cooperation between technology and healthcare is not enough on its own: the most decisive factor is the return of the human touch and reciprocal communication. All of these suggest that technology is an important ally in the ‘renaissance of medicine’ that starts to treat patients as it should always have had.