An institutional ethnography of chronic pain management in family medicine (COPE) study protocol

Providing cost-effective care for the increasing numbers of complex elderly and/or co-morbid patients is a global problem facing industrialized and non-industrialized nations [1]. With an aging population and individuals living longer lives, healthcare costs continue to rise at rates faster than other parts of the economy [2]. In response, payers have sought to contain spending growth through healthcare rationing and efficiency gains. Exacerbating these challenges are the growing numbers of individuals with chronic disease and multi- morbidities, a proportion of who develop complex health conditions. For example, in Ontario, one study estimated that complex patients constitute 1 % of the province’s 13.7 million people but accounted for 34 % of Ontario health care expenditures [3]. Similar research has identified the same trend from the United States [4] and the United Kingdom and Europe [5]. Costs associated with managing complex care patients have generated a growing sense of urgency due to the increasing emphasis on accountability, the sustainability of health care, and pressures posed by population aging.

In many jurisdictions across Canada, governments have launched priority initiatives to improve the care costs of complex patients. These initiatives have been based on the assumption that improved coordination will lead to faster care at reduced costs [6]. Often these initiatives have called for researchers to develop innovative models that are both patient-centred and cost effective. Moreover, in Canada, as well as in many other countries, one of the main problems identified in the care of complex patients is poor coordination of services [1]. Poor coordination of services has been described as impeding both good care and efficient use of health care dollars. It has been estimated that in the province of Ontario better integration of care would result in savings of $4 to $6 billion per year from reductions in redundant services, improved coordination and provision of more appropriate services [2].

At the same time that Ministries of Health, health services researchers and media are recommending cost-saving measures and creation of new and innovative models of care, those working in social science have been questioning the nature and framing of these public policy debates. Many have challenged the hidden assumptions underlying the import and application of performance measurement and accountability principles developed in business settings into health care settings [7‐9] and have sought to draw attention to the implications of the resultant discourses that are shaping public policy debates. They have, for example, challenged the “virtual realities” created by systems of accounting based on administrative databases [7‐9] that produce this notion of “high users” of health care resources cited above. Nevertheless, these debates are often not well- integrated into mainstream conversations about health policy and practice [10].

In this context, our study builds on an innovative Canadian Institutes of Health Research (CIHR) funded research program that uses a social science lens through which to view the organization of the care of patients with chronic osteoarthritis (OA) pain, many of whom have multiple co-morbidities [11]. It is clear that that there is a need for such research as this is where the majority of patient care takes place and is seen as a key determinant in complex patients’ need for care [12]. Moreover, this research also seeks to explore how other stakeholders are involved in coordination of care not as separate objects of study but as part of the same patient care “system”. This will be accomplished by speaking with primary care physicians and asking them to describe both what they do and who else is involved in the care they deliver (for example, pharmacy, orthopedic surgeons, physiotherapists) to patients with multi- morbidities and chronic pain.

Complex patients are the focus of much debate and concern in the contemporary healthcare context. They are defined as those who have more than one of the following five major chronic conditions: arthritis, diabetes, heart disease, chronic lower respiratory tract disease and stroke [13]. Patients with these chronic conditions may also suffer from mental health problems or addictions [13]. Multi- morbidity is even more important as each condition may influence the care of the other condition(s), result in interactions between therapies and/or direct contraindications to therapy and thereby limit life expectancy [14]. At the patient level, multi-morbidity has been found to affect quality of life, ability to work, disability and mortality [15]. In addition, the process of navigating care across different specialists is burdensome for patients [16] and is a patient safety issue [3]. Our previous work in patients with osteoarthritis (OA) pain suggests discordance between the policy goals of improving patient care and the experience of patients [17, 18].

Arthritis, specifically OA, is one of the most common, disabling, and costly chronic diseases [19‐21]. It is a degenerative joint disease that most commonly affects the knees, hips, hands, and spine and is characterized by a slow evolution of symptoms (joint pain and stiffness) and disability over time [22‐24]. Arthritis is the most frequent cause of chronic pain which is debilitating to the individual and extremely costly to society. Primary care is most often the first contact for people seeking symptom relief. Truly interprofessional care (IPC) is necessary to provide appropriate evidence-based pain management and self-management support for these patients who are seeking appropriate strategies to ameliorate and limit progression of their chronic pain and resultant disability. Yet achieving successful IPC often remains an elusive goal in practice [25].

Several research gaps have been identified in relation to primary care in musculoskeletal care, including OA [26]. These include well-known issues such as a lack of comprehensive management that includes exercise and weight loss strategies [27], a focus on other chronic conditions or co- morbidities that may be considered more urgent [28, 29], and low referrals rates to both physiotherapy and total joint arthroplasty [29]. There are also ongoing controversies associated with the use of opioid medication to manage pain and concerns with possible medication dependence, misuse, and addiction [30‐32]. Finally, at the patient level, there are many socio-economic factors that influence help-seeking, referral, and treatment, with some patients “falling through the cracks” [33]. However, despite our knowledge of these various gaps, what remains unknown are strategies or models of care that, while rooted in primary care – the “medical home” for most patients [34] – are coordinated effectively with other care providers, policymakers, patients, and their families and offer the benefits of IPC.

Primary care is the context for most OA education and management. The role of context in health care has been increasingly recognized as important at the local level [35]; however, context is often described in abstract terms and may refer only to a description of geography or place [36]. The need to investigate the empirical context of the primary care setting, not as it exists in isolation or in the abstract, but as it pertains to other providers in the patient journey is critical in order to improve patient care of OA pain management. This will allow for an exploration of how primary health care is – or could be better– integrated with other services that play an important role in health, such as housing, education, and income. The patient-centred medical home has been introduced as a chronic care model that can reduce costs [37]. It emphasizes the need for “care management” to be based in primary care and has become increasingly important in Canada as well as internationally [38]. Several studies of care management in primary care show convincing evidence of improving quality [39‐45]. These studies measured a variety of quality outcomes, including patient satisfaction, functional ability [capacity to perform basic activities of daily living], mortality, bed disability days and overall quality of life. The results of care management studies in primary care are mixed regarding reductions in hospital use and healthcare costs. All of these studies enrolled patients with multiple chronic conditions who were at high or moderate risk of incurring major health care costs. Each program placed substantial emphasis on training the care manager team, keeping care manager panel sizes at reasonable levels, forging a close relationship between care managers and primary care physicians and including care manager interactions with patients in-clinic, and at home by telephone.

This study will employ the approach of institutional ethnography (IE) to investigate how primary care physicians define, encounter and manage complex patients who experience chronic pain. Our overarching research question is: How do primary care physicians describe the work they do in caring for patients with complex chronic pain conditions? This question will become our starting point, rather than the end point, to allow our team to explicate how care is put together at the level of the institution (macro) with attention to how care is coordinated in local practice (micro). Using an expanded definition of work will allow us to understand the many types of work that physicians do (e.g. examining patients, making phone calls, filling out forms, email) and also alerts us to how the discourses and concerns of institutions enter into the everyday language of care providers. This will achieve the following specific objectives: