Introduction

Consumer involvement is becoming an increasingly important part of health systems, health policy and service design. Consumer involvement is seen as ‘an important way to improve our healthcare system’ , and encompasses not only consumers being involved in decisions about their own care but also in decisions about how health services and systems are designed and delivered . In some countries, such as Australia , New Zealand and Canada , consumer involvement is embedded into the national accreditation standards for health services. Internationally, the World Health Organization has promoted concepts such as informed and empowered individuals and families as one strategy for achieving improved health outcomes worldwide .

Alongside this environment of increasing consumer participation, there is also increased focus on using Models of Care (MoCs) as a vehicle to drive evidence into policy and practice through whole-of-sector changes at a health system, health service, health professional and consumer level as a way to manage the increasing burden of chronic disease care. MoCs are defined by Briggs et al. (2014) as “an evidence-informed policy or framework that outlines the optimal manner in which condition-specific care should be made available and delivered to consumers. MoCs aim to address current and projected community needs in the context of local operational requirements. The guidance provided is coined as ‘the right care, delivered at the right time, by the right team, in the right place, with the right resources’” . A MoC approach ideally encourages co-design for health policy, programme and service delivery between clinicians and consumers and also between policy makers and consumers, ensuring comprehensive embedding of consumers’ perspectives and needs. This intersection of increasing consumer involvement and increased focus on MoC development provides an exciting opportunity to harness consumer involvement activities to inform and strengthen the design and implementation of MoCs.

This chapter will present contemporary, state-of-the-art and practice-relevant reviews for different strategies for consumer involvement informed by the strongest evidence (from systematic reviews ). The evidence will be the focus of this chapter, and where possible we have drawn a series of practice points from the systematic reviews to show how to facilitate implementation of consumer involvement across all levels of healthcare design and delivery. Additionally, we have provided some directions to different guides and toolkits from around the world that can be used to support the local implementation of consumer involvement activities as it relates to MoCs.

Importantly, while there are recommendations included in this chapter, it is not intended as a manual for implementation of consumer involvement in musculoskeletal MoCs. The design and implementation of consumer involvement activities is necessarily dependent on local context – including features of the health system, health service, environment and the consumers themselves. Importantly, the ‘one-size-fits-all’ approach is not available to implement consumer involvement activities within MoCs, instead this chapter aims to provide information on the many options available.

This chapter will examine aspects of musculoskeletal MoCs which provide opportunities for consumer involvement and present the systematic review evidence relating to each. To examine the levels of intervention and influence within the health system, we have used the three levels of micro, meso and macro identified by Speerin et al. (2014) [9]:

• 1.
  

  The micro level – participation of consumers in the co-care of their condition;

  
  
• 2.
  

  The meso level – delivery systems, infrastructure and the competencies/training of health professionals; and

  
  
• 3.
  

  The macro level – health systems, organisations, health policy and socioeconomic factors.

Micro-level consumer participation interventions typically take place between consumers and health professionals; meso-level interventions between consumers and health services; and macro-level interventions between consumers and health system designers (see Fig. 1 ).

Consumer involvement domains across the micro-, meso- and macro-levels of healthcare (adapted from Lowe et al., 2011).

Before the examination of systematic review evidence, a number of case studies have been presented to illustrate how consumer involvement has been harnessed in relation to musculoskeletal MoCs. Additionally, at the end of the chapter, we have outlined some areas for future research to further support consumer involvement in the development and implementation of musculoskeletal MoCs.

Which aspects of healthcare matter to people with musculoskeletal conditions?

As worldwide morbidity and mortality continues to shift away from communicable diseases to non-communicable and chronic conditions , health systems worldwide need to adapt to better service health consumers who will have contact with health services and professionals over long periods of time through many life and disease stages. The 2010 Global Burden of Disease study showed that musculoskeletal conditions were the second most common cause of disability worldwide . Disability attributable to musculoskeletal conditions has increased markedly since 1990, and this increase is likely to continue due to the growing global prevalence of risk factors for these conditions, such as obesity and sedentary lifestyle . Developing and implementing effective MoCs for musculoskeletal conditions is one strategy for managing the increasing global burden of disability attributable to musculoskeletal conditions . However, for a MoC to ‘address current and projected community need’ as stated in the definition by Briggs et al. (2014) , consumer involvement in the development and implementation of musculoskeletal MoCs is of vital importance if they are to be consumer centred.

At the heart of consumer involvement in healthcare, health systems and clinical practice need to be guided and supported by consumers’ needs and wants. Given the importance of active participation by consumers in the management of many musculoskeletal conditions, indicating a high need for patient-centred care, understanding consumers’ perceived needs will be important in optimising health outcomes. Two recent pieces of work have examined the needs of consumers with a range of musculoskeletal conditions.

Wluka (2016) conducted a systematic scoping review of consumers’ perceived needs related to musculoskeletal conditions. This work was co-designed with a consumer-based organisation concerned with musculoskeletal health. The aim of the suite of reviews was to identify and meaningfully integrate the available information regarding adult consumers’ perceived needs for health information, health service and other services related to a variety of musculoskeletal conditions, including rheumatoid arthritis (RA), ankylosing spondylitis (AS), osteoarthritis (OA) back pain, neck pain and osteoporosis (OP). Principles of meta-ethnography were used to synthesise the identified data. A framework of concepts and underlying themes for each main area of need by condition was initially developed from the primary data and any pertinent points raised in the identified documents. This underwent an informative iterative process, with involvement of at least two experienced clinical rheumatologists to ensure that the framework of concepts and themes was clinically meaningful and retained construct validity. Identified consumer needs were fairly consistent across the conditions.

In terms of health information, Wluka (2016) found that consumers with musculoskeletal conditions wanted high-quality, simple, accurate and consistent information, including information about the causes of their pain. Consumers collect information about their condition and appropriate management, managing flares and about the role of lifestyle factors in addressing chronic conditions (for example, the role of diet, exercise). Consumers collect information from a variety of sources in addition to healthcare providers, such as from multimedia platforms and peers. Each of these was found to have their own strengths and play complementary roles in supporting the people in self-management.

In regard to health service delivery, Wluka (2016) found that people preferred “healthcare providers who take a thorough, holistic approach to … healthcare, have good communication skills, and allow consumers to take an active role in their own management” (p. iii). Consumers want care delivered at convenient times and places, and are open to delivery other than face-to-face contact with the healthcare provider , depending on the current need. Thus, for example, electronic contact with the healthcare provider to address minor issues and to deal with problems with consultations has the potential to improve care, particularly for those with limited access due to rurality or time constraints (for example, shift workers). Incorporation of e-mails to communicate more effectively in real time and implementation of telehealth within health services would address these needs. Funding and clinical governance models to support these alternative modes of service delivery need to be developed and supported by jurisdictional health policy. Although the benefits and convenience of medications were understood, consumers were concerned about side effects and addiction. Consumers also had concerns about procedural interventions such as joint replacement surgery. Individualised information and exercise programmes were found to be preferred to programmes provided “off the shelf”.

A number of common barriers to accessing healthcare were identified. These included cost, appointment and referral waiting times, and the location of the healthcare provider. Adherence issues were related to time, transport, cost and a variety of other factors. Social obligations were also a barrier, particularly for women.

In terms of service needs beyond healthcare, this review also identified that support for all facets of life, including support around the home, from social outlets and peer support were common needs of consumers. People with musculoskeletal conditions consistently identified work to be an important source of identity, financial security and social connections, but reported that environmental factors could affect their ability to stay in employment. Accessing resources that could aid job security was a priority, with some expressing a need for improved communication between consumers’ employers and healthcare providers to optimise the work environment. Safe transport and disability parking permits were also identified needs.

Wluka (2016) recommended several strategies for improving the alignment between health services and consumer needs. These include:

• •
  

  improving communication between health providers and consumers;

  
  
• •
  

  implementing a team approach to care, which includes information provision by non-medical staff with musculoskeletal expertise, such as allied health providers; and

  
  
• •
  

  providing accessibility of services through the use of new technologies, such as e-mail contact or telehealth, and through face-to-face contacts to address issues as they arise.

In a report for Arthritis and Osteoporosis Victoria and Arthritis and Osteoporosis Western Australia, Slater et al. (2016) investigated the experiences and needs of people aged 16–24 years with persistent musculoskeletal pain as a result of a variety of musculoskeletal conditions. Fifty-nine young people participated in a survey and/or in a semi-structured interview (n = 23) about their experience of pain and their interactions with the health system and needs specifically in relation to the use of digital technologies to lever access to best practice pain care. From these surveys, a number of recommendations have been provided on health service delivery to young people with persistent musculoskeletal pain.

Slater et al. (2016) found that while pain in young people significantly affected their lives – especially their ability to participate in work, study, social life and managing the financial aspects of pain – they often experienced difficulties in finding health professionals to understand and legitimise the pain they were experiencing. This was a problem especially for people who did not undergo a specific diagnosis (for example, those with non-specific low back pain), and this experience created worries and feelings of uncertainty for young people about their future given their persistent pain experience. The study also highlighted the relationship between pain and psychological health – almost two-thirds of study participants experienced mental health co-morbidities.

The study also identified a lack of services and resources specific to the needs of young people. The potential role of digital technologies to provide accessible, free and reliable resources is currently unmet, but seen as an important way to engage young people in their healthcare due to their willingness to use the digital space to connect with their communities and gather and share information online.

All the recommendations from the study by Slater et al. (2016) advocate the redesign of health services to better support young people with musculoskeletal conditions. Delivery systems need to be tailored to the needs of young people, including engaging young people in developing MoCs; integrating new technologies into systems of care to streamline interdisciplinary interventions; and building research capacity and an evidence base that directly relates to musculoskeletal pain in young people. Because of the link between mental health and pain, models of musculoskeletal pain care also need to be integrated with mental healthcare for young people. Capacity, knowledge and skills also need to be built within the health workforce, including the capacity and knowledge to deliver individualised, rather than ‘one-size-fits-all’ care.

Finally, efforts need to be made to increase understanding throughout the community of the complex, multidimensional nature of pain. This includes building a better understanding of pain by consumers, health professionals, employers, families and friends.

It is clear from the work of Wluka (2016) among adults and Slater et al. (2016) among younger people that, currently, there are many unmet consumer needs in the delivery of health information and services for people with musculoskeletal conditions. This highlights the key role for consumers in supporting the development and implementation of musculoskeletal MoCs that will better support the delivery of the right care, at the right time, by the right team . Although these reports provide useful background information about the needs of consumers with musculoskeletal needs, both pieces of work emphasise the importance of directly involving the target consumer groups when designing and delivering healthcare.

This chapter will explore some practical and meaningful ways in which health professionals, services and health system decision makers can include consumers in the co-design and co-delivery of care.

Which aspects of healthcare matter to people with musculoskeletal conditions?

As worldwide morbidity and mortality continues to shift away from communicable diseases to non-communicable and chronic conditions , health systems worldwide need to adapt to better service health consumers who will have contact with health services and professionals over long periods of time through many life and disease stages. The 2010 Global Burden of Disease study showed that musculoskeletal conditions were the second most common cause of disability worldwide . Disability attributable to musculoskeletal conditions has increased markedly since 1990, and this increase is likely to continue due to the growing global prevalence of risk factors for these conditions, such as obesity and sedentary lifestyle . Developing and implementing effective MoCs for musculoskeletal conditions is one strategy for managing the increasing global burden of disability attributable to musculoskeletal conditions . However, for a MoC to ‘address current and projected community need’ as stated in the definition by Briggs et al. (2014) , consumer involvement in the development and implementation of musculoskeletal MoCs is of vital importance if they are to be consumer centred.

At the heart of consumer involvement in healthcare, health systems and clinical practice need to be guided and supported by consumers’ needs and wants. Given the importance of active participation by consumers in the management of many musculoskeletal conditions, indicating a high need for patient-centred care, understanding consumers’ perceived needs will be important in optimising health outcomes. Two recent pieces of work have examined the needs of consumers with a range of musculoskeletal conditions.

Wluka (2016) conducted a systematic scoping review of consumers’ perceived needs related to musculoskeletal conditions. This work was co-designed with a consumer-based organisation concerned with musculoskeletal health. The aim of the suite of reviews was to identify and meaningfully integrate the available information regarding adult consumers’ perceived needs for health information, health service and other services related to a variety of musculoskeletal conditions, including rheumatoid arthritis (RA), ankylosing spondylitis (AS), osteoarthritis (OA) back pain, neck pain and osteoporosis (OP). Principles of meta-ethnography were used to synthesise the identified data. A framework of concepts and underlying themes for each main area of need by condition was initially developed from the primary data and any pertinent points raised in the identified documents. This underwent an informative iterative process, with involvement of at least two experienced clinical rheumatologists to ensure that the framework of concepts and themes was clinically meaningful and retained construct validity. Identified consumer needs were fairly consistent across the conditions.

In terms of health information, Wluka (2016) found that consumers with musculoskeletal conditions wanted high-quality, simple, accurate and consistent information, including information about the causes of their pain. Consumers collect information about their condition and appropriate management, managing flares and about the role of lifestyle factors in addressing chronic conditions (for example, the role of diet, exercise). Consumers collect information from a variety of sources in addition to healthcare providers, such as from multimedia platforms and peers. Each of these was found to have their own strengths and play complementary roles in supporting the people in self-management.

In regard to health service delivery, Wluka (2016) found that people preferred “healthcare providers who take a thorough, holistic approach to … healthcare, have good communication skills, and allow consumers to take an active role in their own management” (p. iii). Consumers want care delivered at convenient times and places, and are open to delivery other than face-to-face contact with the healthcare provider , depending on the current need. Thus, for example, electronic contact with the healthcare provider to address minor issues and to deal with problems with consultations has the potential to improve care, particularly for those with limited access due to rurality or time constraints (for example, shift workers). Incorporation of e-mails to communicate more effectively in real time and implementation of telehealth within health services would address these needs. Funding and clinical governance models to support these alternative modes of service delivery need to be developed and supported by jurisdictional health policy. Although the benefits and convenience of medications were understood, consumers were concerned about side effects and addiction. Consumers also had concerns about procedural interventions such as joint replacement surgery. Individualised information and exercise programmes were found to be preferred to programmes provided “off the shelf”.

A number of common barriers to accessing healthcare were identified. These included cost, appointment and referral waiting times, and the location of the healthcare provider. Adherence issues were related to time, transport, cost and a variety of other factors. Social obligations were also a barrier, particularly for women.

In terms of service needs beyond healthcare, this review also identified that support for all facets of life, including support around the home, from social outlets and peer support were common needs of consumers. People with musculoskeletal conditions consistently identified work to be an important source of identity, financial security and social connections, but reported that environmental factors could affect their ability to stay in employment. Accessing resources that could aid job security was a priority, with some expressing a need for improved communication between consumers’ employers and healthcare providers to optimise the work environment. Safe transport and disability parking permits were also identified needs.

Wluka (2016) recommended several strategies for improving the alignment between health services and consumer needs. These include:

• •
  

  improving communication between health providers and consumers;

  
  
• •
  

  implementing a team approach to care, which includes information provision by non-medical staff with musculoskeletal expertise, such as allied health providers; and

  
  
• •
  

  providing accessibility of services through the use of new technologies, such as e-mail contact or telehealth, and through face-to-face contacts to address issues as they arise.

In a report for Arthritis and Osteoporosis Victoria and Arthritis and Osteoporosis Western Australia, Slater et al. (2016) investigated the experiences and needs of people aged 16–24 years with persistent musculoskeletal pain as a result of a variety of musculoskeletal conditions. Fifty-nine young people participated in a survey and/or in a semi-structured interview (n = 23) about their experience of pain and their interactions with the health system and needs specifically in relation to the use of digital technologies to lever access to best practice pain care. From these surveys, a number of recommendations have been provided on health service delivery to young people with persistent musculoskeletal pain.

Slater et al. (2016) found that while pain in young people significantly affected their lives – especially their ability to participate in work, study, social life and managing the financial aspects of pain – they often experienced difficulties in finding health professionals to understand and legitimise the pain they were experiencing. This was a problem especially for people who did not undergo a specific diagnosis (for example, those with non-specific low back pain), and this experience created worries and feelings of uncertainty for young people about their future given their persistent pain experience. The study also highlighted the relationship between pain and psychological health – almost two-thirds of study participants experienced mental health co-morbidities.

The study also identified a lack of services and resources specific to the needs of young people. The potential role of digital technologies to provide accessible, free and reliable resources is currently unmet, but seen as an important way to engage young people in their healthcare due to their willingness to use the digital space to connect with their communities and gather and share information online.

All the recommendations from the study by Slater et al. (2016) advocate the redesign of health services to better support young people with musculoskeletal conditions. Delivery systems need to be tailored to the needs of young people, including engaging young people in developing MoCs; integrating new technologies into systems of care to streamline interdisciplinary interventions; and building research capacity and an evidence base that directly relates to musculoskeletal pain in young people. Because of the link between mental health and pain, models of musculoskeletal pain care also need to be integrated with mental healthcare for young people. Capacity, knowledge and skills also need to be built within the health workforce, including the capacity and knowledge to deliver individualised, rather than ‘one-size-fits-all’ care.

Finally, efforts need to be made to increase understanding throughout the community of the complex, multidimensional nature of pain. This includes building a better understanding of pain by consumers, health professionals, employers, families and friends.

It is clear from the work of Wluka (2016) among adults and Slater et al. (2016) among younger people that, currently, there are many unmet consumer needs in the delivery of health information and services for people with musculoskeletal conditions. This highlights the key role for consumers in supporting the development and implementation of musculoskeletal MoCs that will better support the delivery of the right care, at the right time, by the right team . Although these reports provide useful background information about the needs of consumers with musculoskeletal needs, both pieces of work emphasise the importance of directly involving the target consumer groups when designing and delivering healthcare.

This chapter will explore some practical and meaningful ways in which health professionals, services and health system decision makers can include consumers in the co-design and co-delivery of care.

A framework for consumer involvement in the development and implementation of musculoskeletal MoCs

In 2011, Lowe and colleagues published a taxonomy of communication and involvement interventions for consumers’ safe and effective use of medicines. This publication was based on earlier work performed by the Cochrane Consumers and Communication Group in developing a taxonomy of interventions for consumer communication and participation . The taxonomy provides a framework for analysis of consumer communication and participation across all levels (macro, meso and micro) of healthcare. While this taxonomy originally focussed on the use of medicines, we have adapted the category definitions to suit a broad range of interventions. Generally, the only change to the taxonomy was changing the word ‘medicines’ to the word ‘treatment’ (See Table 1 ).

In the Knowledge-to-Action project undertaken by the Consumers and Communication and the Effective Practice and Organisation of Care Cochrane Groups, the taxonomy was modified into a pyramid of interventions, populated with examples of intervention activities at each level (see Fig. 1 ). For example, ‘print and online information resources’ fits at the ‘to provide information or educations’ level of the pyramid, while ‘consumer representation on the board’ may fit at the ‘to involve consumers at the systems level’ domain of the pyramid. This provides a useful model of how the taxonomy can be applied in practice to design and map consumer communication and participation interventions . The pyramid model also aims to illustrate that the interventions with the widest effect are those that happen at the macro level of healthcare.

For the purposes of this chapter, we have applied this adaptation of Lowe’s taxonomy and the pyramid model to create a framework for organising and presenting the evidence about involving people with musculoskeletal conditions to support implementation of contemporary MoCs. The framework will hopefully aid implementation, because it focuses on the purpose, for example, learning skills for self-management of individual care or consumer participation in planning new services . The taxonomy categories also align with a contemporary MoC evaluation framework . This paper is not the first to adapt Lowe’s taxonomy to suit another consumer group/intervention type. In 2013, Willis et al. used Lowe’s taxonomy as the basis for developing their own taxonomy for categorising consumer communication and participation as part of the ‘Communicate to Vaccinate’ project, and it has subsequently been used to map communication and involvement interventions in low- and middle-income countries .

Real-world consumer involvement: case studies

Three case studies of consumer involvement in different aspects of healthcare are presented to help translate the systematic review evidence into practice and to provide direction to available resources which, through consumer involvement, support implementation of MoCs.