Introduction
The healthcare system has a focus on patient empowerment today with the goal to empower patients to become active participants in their care [
1]. This requires not only an understanding of patients’ experiences from disease and illness, but also expectations of healthcare professionals providing patient involvement and organizational support for these efforts [
2]. Empowered patients are described through several concepts in the literature, often as active, engaged, empowered, and knowledgeable participants, even though there is no consensus of the definition in the literature [
3]. In the early 2000s the term
e-patient was initially coined by Ferguson and Frydman inspired by the digital development within society which was reflected in many patients’ and informal caregivers’ behaviors [
4]. E-patients were originally described as patients or informal caregivers (such as a family member or other persons with a close relationship to the patient) who used the Internet to find guidance regarding their own, or someone else’s, health challenge. E-patients use their own health data to learn from and engage in innovations of digital tools to meet health-related needs. They find ways to actively make their current situation more sustainable, rather than passively waiting for potential future solutions or cures [
5‐
7]. A concept in close relation to e-patients, is
patient lead user (“Spetspatienter” in Swedish) defined by Riggare [
8] as:
“Patients or family members who take a larger responsibility for their own health and well-being. They meet their health-related challenges in a constructive and knowledge-based way, while taking their physical and mental abilities as well as capacity into account. Patient lead users make use of their own experiences to improve healthcare, on all levels of the system, for the sake of both themselves and other patients. Often you do not become a patient lead user by choice, it is something that you do to be able to manage and navigate the complex healthcare system” [
8].
The concept of patient lead user originates from Von Hippel’s
lead users, describing lay persons having a great need within a specific context, without any available solutions at the market. Lead users will then innovate solutions for that need, and the general market will follow [
9,
10]. These concepts describe patients’ and informal caregivers’ active engagement, however their self-management tasks and healthcare system involvement are further described in a recent study of empowering behaviors of patients and informal caregivers. Here exploratory and influencing activities that patients and informal caregivers perform are characterized [
11]. The exploratory empowering behaviors are labelled as
the self-care expert, the knowledge seeker, the academic, the patient researcher, the tracker, the coping-expert, and
the exposed and the influencing behaviors as
the innovator, the entrepreneur, the communicator, the mentor, the healthcare coordinator, the healthcare partner, and
the activist [
11]. These empowering behaviors have evolved in parallel to the digital transformation in society [
7] and require patients and informal caregivers to be involved and receive feedback. Due to the development of digital solutions for self-management, technological information systems, and focus on patient involvement during the 21st century in Sweden [
1], patients’ and informal caregivers’ behaviors have changed. Swedish healthcare is nationally regulated, tax-funded, and locally administrated. Inhabitants of all social groups are entitled to a strong safety net since everyone have the same benefits and a maximum out-of-pocket cost [
12,
13]. There is a high use of the Internet in the Swedish population (94% on a daily basis in 2022) [
14], and, in line with other Scandinavian countries, long-term experiences of end user involvement in digital technology [
15]. This might increase a movement towards more empowered patients and informal caregivers in Sweden.
However, studies researching healthcare professionals’ knowledge and perception of these patient behaviors are scarce. Some studies describe healthcare professionals’ concerns about patients’ online information seeking which might lead to stressful encounters with unrealistic expectations from patients [
16,
17], as well as the concern of patients or informal caregivers finding harmful information [
17]. Other studies show that healthcare professionals believe ideas and questions raised from patients’ online information searches could improve diagnostic decision making [
18] and the patient-professional relationship [
19]. There seem to be opportunities for healthcare professionals to ensure quality-controlled information access of their patients, for example by providing recommendations of websites, referrals to different peer-communities (e.g. patient associations), explaining or discussing research results with patients, or including patients’ own self-generated data into medical decision making [
20]. Still, research indicate a continued concern from healthcare professionals regarding patients and informal caregivers searching medical information online [
17,
20].
More knowledge is needed regarding the experiences and attitudes of healthcare professionals when encountering empowered patients and informal caregivers in clinical settings, and to what extent clinical workplaces offer strategies and support for this. Could empowered patients and informal caregivers contribute to improving the quality of health care? Therefore, the aim of this study was to investigate healthcare professionals’ (1) attitudes towards and (2) experiences of working with empowered patients and informal caregivers, and (3) perception of workplace support with regards to collaborating with empowered patient and informal caregivers.
Discussion
Overall, the healthcare professionals participating in this survey revealed a positive attitude towards empowered patients and informal caregivers, despite lack of experiences of working together with them. Only a small proportion of respondents considered their organizations to provide the optimal conditions to involve patients and informal caregivers as well as support the respondents when difficult situations occurred. The questionnaire developed for this study was based on the self-empowering behaviors found by Scott Duncan et al. [
11]. Meeting the influencing self-empowering behaviors [
11] showed that our respondents had positive attitudes towards patients (85%) and informal caregivers (83%) sharing their knowledge with other peers as mentors or communicators. The respondents had encouraged this to some degree, and it existed some organizational support. It was as well positive attitudes regarding patients (85%) innovating for their needs, as well as for informal caregivers (76%). The respondents were to some degree involved in patient and informal caregiver innovations. However, the support from their organization regarding managing these innovations was rather low (34%). Being engaged in healthcare development as activist or healthcare partner was considered positive if being a patient (81%) and somewhat positive being an informal caregiver (66%). However, workplace support was rather low for involving patients (45%) and informal caregivers (33%) in healthcare development. Even though there are overall positive attitudes from healthcare professionals, it was reported in Scott Duncan et al. [
11] that patients and informal caregivers considered having low support for their efforts and wished to do more than was expected from them by healthcare professionals [
11]. The respondents also considered it to be positive when patients (75%) and informal caregivers (78%) coordinated their own health and care, whereas patients and informal caregivers considered coordinating their own care as a burden [
11]. The respondents did as well have less experience of helping out coordinating the care (58%), even though patients and informal caregivers have reported a need for better support [
11].
The participants’ positive attitudes are contradictory to other studies [
25,
26], where rather negative attitudes are displayed from healthcare professionals regarding patient involvement. Less experiences of working together with empowered patients and informal caregivers among our respondents could be the result of different barriers for patient involvement. One barrier reported in the literature is lack of communication and confidence of physicians [
27,
28]. Other barriers reported are the paternalistic structure within the healthcare organization and lack of time and encouragement [
28,
29]. It seemed to be even more difficult to involve informal caregivers for our respondents. The literature expresses lack of involvement, support, and being acknowledged by healthcare professionals as informal caregivers [
30‐
32] as a confirmation of these barriers.
A weakness of our study is the low response rate. Still, the sample included a total of 279 participants in an online survey despite a demanding time in society and health care because of the COVID-19 pandemic. Web surveys also tend to generate lower average (44,1%) in response rate than paper and telephone surveys [
33]. Not using a validated survey could be a weakness, however, both cognitive interviews and pilots were performed to ensure the relevance of the questions. A non-probability sampling was used, which might have caused a selection bias and a skewed sample [
23], since we do not know if the respondents were more positive towards empowered patients and informal caregivers in general. Given the healthcare professionals’ positive attitudes, future research needs to investigate how healthcare systems can better meet the willingness to involve empowered patients and informal caregivers to a larger extent.
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