The concept of “expert patient” has been developed in the last two decades to define a patient who has a significant knowledge of his/her disease and treatment in addition to self-management skills. However, this concept has evolved over the last years, and these patients are now considered, not only to be more efficient in the management of their own condition and communicating effectively with health professionals, but to also act as educators for other patients and as resources for the last, provide feedback on care delivery, and be involved in the production and implementation of practice guidelines, as well as in the development and conduct of research initiatives. There are some barriers, however, to the integration of this new contributor to the health care team, and specific requirements need to be considered for an individual to be considered as an expert. This new player has, however, a potentially important role to improve current care, particularly in respiratory health.
Diseases such as asthma, chronic obstructive pulmonary disease (COPD), diabetes, and many other chronic conditions represent an increasing burden for respiratory health systems. For example, loss of productivity in Canada in 2010 due to the morbidity associated with respiratory diseases was estimated to be 117 million dollars [
What is called “therapeutic education,” aiming to improve knowledge and self-management or comanagement of a chronic disease, is a universal recommendation of current guidelines. This is particularly true for asthma and COPD, although, for the last, how these interventions should be applied and what should be the content of these interventions is still a matter of debate. According to Wilson et al., a better understanding of patients’ educational needs should allow health professionals to optimize the effects of readaptation or educational programs for COPD, in integrating essential notions in a format that is acceptable for the patients [
For asthma, Gibson et al. showed that the benefits provided through patient education and self-management included an improvement in quality of life and in asthma control, in addition to a reduction in hospital admissions, emergency visits, rescue bronchodilator use, need for oral corticosteroids, and number of urgent medical visits [
Efforts should therefore be done to improve access to high-quality patient education not only in specialized centers but also in primary care settings. In this regard, we recently performed a study on the effects of providing educational interventions to patients followed up in family medicine clinics (groupe de médecine familiale—GMF) in their own environment. It showed that, in addition to improving knowledge of asthma patients, it could reduce unscheduled medical visits and lead to a better use of medications [
Furthermore, although educational interventions are ideally done by trained educators, following their initiation by the physician, both the physician and the educator can also take part in shared-decision making (SDM), following the transfer of basic knowledge to the patient and acquisition of self-management skills. Indeed, recent studies on SDM have shown the benefits of involving the patient in treatment decisions, improving patient confidence, and reducing decisional conflicts [
In recent years, patients’ role in disease management has not been restricted to their own care, but they have also been considered as potential deliverers of care or, at least, contributors to improve care delivery and research initiatives. From this, the concept of “expert patient” has emerged [
With an increasing access to information and educational programs, expert patients, even if they have been around for a long time, are increasing in numbers. These patients have a large potential to improve care, particularly for chronic diseases and rare conditions. Expert patients may help health professionals to make appropriate decisions and to improve quality of care. Examples of the possible roles of the expert patients are found in Table
Domains and some possible roles of expert patients.
Clinical | Help disease management (for themselves and/or other patients, particularly for chronic or rare conditions) |
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Educational | Education of other patients |
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Research | Advise on study designs |
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Others | Lobby to health care authorities |
When we look at the definition of an expert patient, we generally find some characteristics that include the acquisition of significant knowledge and skills in a particular domain. Understanding the essential characteristics of a disease and its management and developing communication skills are part of the requirements to become an expert. Recent publications suggest reserving this term for patients who at least (1) want to understand the nature of their health problem and its treatment and wish to use and update their knowledge appropriately; (2) achieve control of their condition; and (3) want to contribute to the management of their disease in partnership with health professionals with whom they should communicate effectively [
We can consider, however, that there are many levels of patient’s expertise and that there are various types of expert patients. For example, a health professional may suffer from a disease not in his or her field of practice and want to acquire additional knowledge to intervene in this domain of health care.
A patient’s family member, sometimes already involved in helping this person, may want to improve his or her skills and knowledge to better support the former. This may help the patient to better use treatments, improve adherence, and facilitate communications with health care givers.
A patient may also want to acquire a good knowledge about his disease without being necessarily an expert. If the knowledge is significant and is applied into care regularly, a certain degree of expertise can nevertheless be achieved. Physicians occasionally acknowledge that some of their patients know their health problems as well as or even better than themselves. With appropriate support, it is recognized that most people suffering from a chronic disease can take responsibility of their disease management, guided by health professionals. This usually results in an improvement of their condition and quality of life.
We are just at the beginning of better defining the concept of expert patient and this should still change over time. Indeed, Cordier recently suggested the necessity to revise this notion and reminds us that this updated concept has been initially promoted in 1999 in a report presented to the British Parliament wishing to find a solution to the increasing problem of chronic diseases [
Although the expert patient’s main role would be to better self-manage their disease, it has been suggested that they could also lead educational programs for fellow patients. However, Newman et al. reported in 2004, after reviewing 62 studies on conditions such as type 2 diabetes, arthritis, and asthma, that only three were lay-led self-management programs, the others being led by health care professionals [
Not only can the expert patient contribute to educating other patients, but he/she can also help update knowledge of health professionals and participate in the development and evaluation of educational programs or guidelines, as well as participate in communities of practice and web-based patient-targeted communications. Identification of patient needs and communication of their values, perceptions, and preferences can help improve management strategies, particularly in specific populations such as immigrants, elderly, or patients from various cultural backgrounds.
Expert patients have recently been integrated into programs to play the role of educators for other patients. In a review of 17 studies involving 7442 participants, Foster et al. showed that this type of intervention could improve, at least on a short-term basis, self-efficacy, autoevaluated health status of the patients, and management of symptoms, in addition to increasing the frequency of aerobic exercises [
Looking at delivery of self-management education in primary care, Partridge et al. also suggested, from a study of 567 patients randomized to care by a nurse or a lay educator, that it is possible to recruit and train lay educators to deliver a discrete area of respiratory care, with comparable outcomes to those seen by nurses [
In Canada, the University of British Columbia Interprofessional Health Mentors Program has recently described its 3-year pilot program as an elective patient-as-teacher initiative in which groups of four students from different disciplines learn together with a mentor suffering from a chronic condition—an “expert by experience”—over three semesters. Students and mentors rated the program highly, and a wide range of important learning outcomes have been documented [
Research-funding bodies increasingly require the participation of patients to research initiatives and promote “patient-oriented” research (POR). POR usually refers to a continuum of research ranging from the initial human studies of a new drug or device to research that evaluates the implementation of interventions in the health care system. It includes the evaluation of new and current diagnostic approaches treatments, devices, or practices, as well as the synthesis, dissemination, and integration of this new knowledge into care [
There are many barriers to the development of expert patients [
The physician can fear that the patient could become a pseudoexpert and that the information acquired is not necessarily exact, evidence-based, or relevant. As an example, there is so much wrong or inappropriate information on the internet and in the media, sometimes conveying misconceptions and notions not based on evidence, applicable to very selective types of patients, commercially biased, or simply wrong. As this is a potential problem, measures such as those suggested in Table
Requirements to become (and remain) an expert patient.
Motivation | Willing to get involved in the process of becoming an expert patient |
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Training and update | Acquire basic education in the domain selected |
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Avoid biases | Avoid any commercial influences or personal biases in interventions |
Newbould et al. [
Many educational programs contribute to developing such experts but are not necessarily called “expert programs.” The initial so-called “expert patient” programs show a certain heterogeneity and their goals were mostly at the level of improving the patient’s own condition. Among those various programs, for example, we find the Glaucoma Expert Patient Program, a glaucoma-specific educational self-management program aimed at improving glaucoma patients’ knowledge, self-management skills, expectations, and adherence to treatment [
In regard to the evaluation of peer-led-programs, the effectiveness of an online self-management program for patients with long-term conditions showed improvements to some extent in many aspects of the conditions and reduced health care use while self-efficacy and satisfaction with the health care system improved significantly [
Globally, few will doubt about potential benefits of an informed patient, ideally with a certain degree of expertise, in managing his/her disease but there is a need to go one step further and assess other benefits of providing a higher level of expertise for patients. This should be counterbalanced with the need for resources allocated to such programs. Furthermore, the influence of patients on educational programs or research projects remains to be evaluated, including their cost-benefits.
Patient education, additional training, and updates should be based on evidence and the most recent guidelines recommendations to ensure quality of information (Table
Current practice guidelines produced by recognized organizations such as thoracic societies could be ideally translated into a format targeting the patient while including the last in their production, but the information should be adapted to the patients who have no background in health care. Recommendations should be easy to understand. There have been, however, difficulties to accomplish this task and with the growing need for effective knowledge translation, particularly with electronic communications and social networks, patient engagement, and patient-oriented research, we need expert patients to fulfill these roles.
Some patients will work without remuneration and may be willing to pay for their training, but, in many instances, they will need support to cover those activities. This could be integrated into current educational programs, institutions, and activities and/or supported by patients’ or other health professional organizations. Cost-benefit of these interventions remains to be determined.
Many tools have been developed to help patients become experts in their disease. Medical organizations, as well as local institutions, have produced such aids and programs. As an example, the Laval University Chair of Knowledge, Education, Prevention, and Knowledge Translation in Respiratory and Cardiovascular Health are developing a series of publications for patients based on the concept of “expert patient” on various respiratory diseases in both paper and electronic format at low cost, in addition to audiovisual materials (
The expert patient has a role to play in the management of chronic diseases, not only for a better management of his/her condition, but also for the development of educational programs and guidelines in addition to improving care delivery and contributing to research initiatives. More should be known, however, on how this new player could optimize its contribution to current health initiatives and how to ensure sufficient quality of their interventions and regular update.
The author declares that he has no competing interests.
The author would like to thank Dr. Samir Gupta for his most useful comments and Ms. Sylvie Carette for her help with the preparation of the paper.