Introduction

User Engagement can be defined as the mutual exchange of information and ideas between the care-giver (health professional) and patient, resulting in an emphatic, trusted relationship which benefits the experience of the user. With engagement, patients are empowered to take an active role in the management of their own health and the health of their communities. The engagement process signifies that the patient has the ability to balance clinical information and professional advice and with their own needs and preferences. Over a period of time, user engagement has extended to influence service design and provision. Maternity services in high resource countries have had a longer experience of user engagement than several other specialty areas. Transparent, effective engagement often results in better quality of care in disease management and prevention. Empathy, effective communication and shared decision making with health professionals are three vital factors required to engage a patient successfully, to improve their experience and ultimately to provide effective, safe services. Successful engagement of women during pregnancy requires not only policy makers and healthcare professionals, but also health communities to think equitably about the social, demographic and cultural factors for effective, efficient delivery of high quality maternity care to women in an environment where resources may be restricted.

Within low-income settings, education adapted to the cultural settings will provide women with empowerment and the adequate background knowledge to make informed choices regarding their own care. This responsibility lies not only with the health professional, but also with the patient, their families and communities.

Women have the right to education, nutrition, economic resources and should equally have influence in how services are provided within healthcare settings. Ultimately they should be involved in their own healthcare decision making. Maternity health status within a society is thought to reflect the degree of respect for women and their position in that society.

Delivering maternity services is not just about providing high quality obstetric care. Multiple factors influence a women’s ability to navigate pregnancy and achieve good outcomes and a positive experience. These include several factors prior to pregnancy including nutritional status, ability to access and use health services, community behaviours, and education as well as household practices. The women’s communities potentially have strong influence in the way that care may be accessed and used. Partners and family members often exert influences which may be positive or negative.

Although maternity service provision has had a long tradition of service user engagement, the profession is only just coming to terms with true empowerment of patients and professional acceptance of decisions that may seem to increase clinical risk and promote maternal choice. There is some evidence that through embracing this, services can be effectively designed to meet the needs of women, be more productive and meet some of the pressures on our healthcare systems within the current global financial environment. We are only too aware that in high resource countries where there are adequate numbers of healthcare personnel to provide services to the pregnant population, the perspectives of users will be different to lower resource settings where basic maternity care may not be available to every pregnant woman.

However, we do believe that the principles of user engagement are applicable across all healthcare settings and when used with quality and safety improvement methods can enhance service provision.

Commissioners of services will be tasked with ensuring high levels of patient satisfaction as an integral part of their commissioning processes. Evidence supports a ‘shared decision making’ model within the patient- healthcare professional interaction improving patient experience considerably and increasing concordance with treatment. There is a sound evidence base for this around the development and provision of cancer services, especially with the advances in technology and treatment within the last three decades. Oncology teams have involved patients in the discussions of treatment options with the intention of maintaining the patient’s quality of life from the patient’s perspective. Patient involvement in the co-design of services has been one of the most effective mechanisms helping us negotiate the complex issues around rationalisation and cost of treatments.

Positive patient experience is fast becoming an important quality measure for several high income countries. Within the NHS in England, patient experience will become an integral part of outcome measures. Many other global healthcare providers have understood the importance of ‘customer satisfaction’ in providing a service. This has translated into integrating patient experience as part of the ‘bottom-line’ in annual reports.

User involvement in clinical decisions

Achieving user engagement can be particularly difficult with regards to clinical decisions. Within the provision of maternity care, there has been a significant shift in high-resource countries to accommodate the wishes of the woman and her family around the mode and place of delivery. Further involvement of the woman in complex clinical decision making is still not common practice and is often absent. This leaves many women and their families feeling disempowered and unsatisfied with clinical management especially when the pregnancy is deemed to be at ‘higher risk’. Patient engagement has the potential to go beyond this and to sustain innovative, effective care, if healthcare professionals are able to engage in a meaningful way with patients, especially through shared responsibility. This type of collaboration can be defined as ‘any behaviour initiated by the doctor or the patient, surrounding the consultation which facilitates the inclusion of the patient’s perspective or the patient’s preferences into the ‘medical plan’. It implies the inclusion of the patient as an equal partner during the consultation. Within maternity services today, we need to move towards this collaborative approach especially around clinical decision making, to enable an equal distribution of power and exchange of information between the woman and health professional. The empowerment of women in these situations is known to promote normality and a more fulfilling experience for mothers and their new families. At present collaboration is widely used in the effective management of chronic disease such as diabetes. Within these settings patients work in partnership with health professionals to define and reach set goals and negotiate decisions regarding future health interventions, enabling the patient to have responsibility. Encouraging healthcare professionals to engage in this requires an investment in training and acquisition of a different set of skills. A team-based, multi-professional approach to this has been shown to be more valuable than individual training.

The use of shared decision making within maternity services is a complex process which requires a significant change in the traditional doctor patient relationship, professional culture, investment in time and an emergent approach to enable the patient to feel empowered. Within the existing models of care, this may lead to a perception of ‘loss of control’, ‘being ignored’ and professional autonomy which will be difficult for many healthcare professionals with deeply ingrained professional identities. In addition, many clinicians are ill-equipped with adequate communication skills to engage in open conversations with their patients and to be challenged by them. The process of engendering and encouraging shared decision making takes time and through the process the patient also needs to be supported in taking a more active part in their clinical decisions. However, it is important to be aware that not all patients will be comfortable with this and therefore we need to be able to tailor care individually.

In low to medium resource countries, the hierarchical role of the doctor versus the patient is deeply rooted in secular, cultural and professional traditions. The combination of strong inter-professional boundaries, secular culture and the high standing of medical personnel in society are barriers to the patients having any power or say in their treatment. The use of traditional birth attendants and village midwives in many low resource settings can further dis-empower women throughout their antenatal and intrapartum care. This is often as a result of the community standing of these individuals and concerns about deviating from traditional methods of care and how these may be perceived by the wider community. Multi-disciplinary working is limited by health professionals themselves who are reluctant to relinquish any perceived ‘power’ and ‘control’ to each other or the patient. In 2010, 58 people from 18 countries attended the Salzburg Global health seminar to consider the role patients can play in their healthcare.

The Salzburg statement on shared decision making highlights the need for increased patient participation and provides guidance on how this can be achieved.

The Salzburg Statement calls upon:

• 1.
  

  Clinicians to:

  
  
  
  
  • •
    

    Recognise that they have an ethical imperative to share important decisions with patients.

    
    
  • •
    

    Stimulate a two-way flow of information and encourage patients to ask questions, explain their circumstances, and express personal preferences.

    
    
  • •
    

    Provide accurate information about options and the uncertainties, benefits, and harms of treatment in line with best practice for risk communication.

    
    
  • •
    

    Tailor information to individual patient needs and allow them sufficient time to consider their options.

    
    
  • •
    

    Acknowledge that most decisions do not have to be taken immediately, and give patients and their families the resources and help to reach decisions.

  
  
  
  
• 2.
  

  Patients to:

  
  
  
  
  • •
    

    Speak out about their concerns, questions and what’s important to them.

    
    
  • •
    

    Recognise that their have a right to equal participants in their care.

    
    
  • •
    

    Seek and use high-quality health information.

  
  
  
  
• 3.
  

  Policymakers to:

  
  
  
  
  • •
    

    Adopt policies that encourage shared decision making, including its measurement, as a stimulus for improvement.

    
    
  • •
    

    Amend informed consent laws to support the development of skills and tools for shared decision making.

  
  

Many patients will lack the confidence or knowledge to question health professionals. An additional benefit of this process and the involvement of the patient and healthcare professionals in a more equitable relationship is that there will be an increased perception of shared responsibility between all those involved for ensuring better outcomes.

It is important, however, to appreciate that in different countries and healthcare settings, the ease with which this statement can be implemented will vary significantly. This is because the ability and readiness of clinician to engage in this way with their patients will vary in different cultural settings.

The users of healthcare in medium to high resource countries have become increasingly aware of their power to influence the care they receive and the ways in which it is delivered. Healthcare delivered through a paternalistic approach, has created a dependency of patients on health professionals and systems, perpetuated to some extent by the autonomy of the medical profession in many countries around the world. This method of clinical management may have a direct impact on compliance and concordance, as patients’ have the assumption that although the healthcare professional ‘knows best’, the recommended management is difficult to follow.

Research within other healthcare delivery models and specialities supports the re-orientation of the health consultation, in the direction of discussion and negotiation between the healthcare professionals and patients, with the aim of reaching unique patient goals.

User involvement in clinical decisions

Achieving user engagement can be particularly difficult with regards to clinical decisions. Within the provision of maternity care, there has been a significant shift in high-resource countries to accommodate the wishes of the woman and her family around the mode and place of delivery. Further involvement of the woman in complex clinical decision making is still not common practice and is often absent. This leaves many women and their families feeling disempowered and unsatisfied with clinical management especially when the pregnancy is deemed to be at ‘higher risk’. Patient engagement has the potential to go beyond this and to sustain innovative, effective care, if healthcare professionals are able to engage in a meaningful way with patients, especially through shared responsibility. This type of collaboration can be defined as ‘any behaviour initiated by the doctor or the patient, surrounding the consultation which facilitates the inclusion of the patient’s perspective or the patient’s preferences into the ‘medical plan’. It implies the inclusion of the patient as an equal partner during the consultation. Within maternity services today, we need to move towards this collaborative approach especially around clinical decision making, to enable an equal distribution of power and exchange of information between the woman and health professional. The empowerment of women in these situations is known to promote normality and a more fulfilling experience for mothers and their new families. At present collaboration is widely used in the effective management of chronic disease such as diabetes. Within these settings patients work in partnership with health professionals to define and reach set goals and negotiate decisions regarding future health interventions, enabling the patient to have responsibility. Encouraging healthcare professionals to engage in this requires an investment in training and acquisition of a different set of skills. A team-based, multi-professional approach to this has been shown to be more valuable than individual training.

The use of shared decision making within maternity services is a complex process which requires a significant change in the traditional doctor patient relationship, professional culture, investment in time and an emergent approach to enable the patient to feel empowered. Within the existing models of care, this may lead to a perception of ‘loss of control’, ‘being ignored’ and professional autonomy which will be difficult for many healthcare professionals with deeply ingrained professional identities. In addition, many clinicians are ill-equipped with adequate communication skills to engage in open conversations with their patients and to be challenged by them. The process of engendering and encouraging shared decision making takes time and through the process the patient also needs to be supported in taking a more active part in their clinical decisions. However, it is important to be aware that not all patients will be comfortable with this and therefore we need to be able to tailor care individually.

In low to medium resource countries, the hierarchical role of the doctor versus the patient is deeply rooted in secular, cultural and professional traditions. The combination of strong inter-professional boundaries, secular culture and the high standing of medical personnel in society are barriers to the patients having any power or say in their treatment. The use of traditional birth attendants and village midwives in many low resource settings can further dis-empower women throughout their antenatal and intrapartum care. This is often as a result of the community standing of these individuals and concerns about deviating from traditional methods of care and how these may be perceived by the wider community. Multi-disciplinary working is limited by health professionals themselves who are reluctant to relinquish any perceived ‘power’ and ‘control’ to each other or the patient. In 2010, 58 people from 18 countries attended the Salzburg Global health seminar to consider the role patients can play in their healthcare.

The Salzburg statement on shared decision making highlights the need for increased patient participation and provides guidance on how this can be achieved.

The Salzburg Statement calls upon:

• 1.
  

  Clinicians to:

  
  
  
  
  • •
    

    Recognise that they have an ethical imperative to share important decisions with patients.

    
    
  • •
    

    Stimulate a two-way flow of information and encourage patients to ask questions, explain their circumstances, and express personal preferences.

    
    
  • •
    

    Provide accurate information about options and the uncertainties, benefits, and harms of treatment in line with best practice for risk communication.

    
    
  • •
    

    Tailor information to individual patient needs and allow them sufficient time to consider their options.

    
    
  • •
    

    Acknowledge that most decisions do not have to be taken immediately, and give patients and their families the resources and help to reach decisions.

  
  
  
  
• 2.
  

  Patients to:

  
  
  
  
  • •
    

    Speak out about their concerns, questions and what’s important to them.

    
    
  • •
    

    Recognise that their have a right to equal participants in their care.

    
    
  • •
    

    Seek and use high-quality health information.

  
  
  
  
• 3.
  

  Policymakers to:

  
  
  
  
  • •
    

    Adopt policies that encourage shared decision making, including its measurement, as a stimulus for improvement.

    
    
  • •
    

    Amend informed consent laws to support the development of skills and tools for shared decision making.

  
  

Many patients will lack the confidence or knowledge to question health professionals. An additional benefit of this process and the involvement of the patient and healthcare professionals in a more equitable relationship is that there will be an increased perception of shared responsibility between all those involved for ensuring better outcomes.

It is important, however, to appreciate that in different countries and healthcare settings, the ease with which this statement can be implemented will vary significantly. This is because the ability and readiness of clinician to engage in this way with their patients will vary in different cultural settings.

The users of healthcare in medium to high resource countries have become increasingly aware of their power to influence the care they receive and the ways in which it is delivered. Healthcare delivered through a paternalistic approach, has created a dependency of patients on health professionals and systems, perpetuated to some extent by the autonomy of the medical profession in many countries around the world. This method of clinical management may have a direct impact on compliance and concordance, as patients’ have the assumption that although the healthcare professional ‘knows best’, the recommended management is difficult to follow.

Research within other healthcare delivery models and specialities supports the re-orientation of the health consultation, in the direction of discussion and negotiation between the healthcare professionals and patients, with the aim of reaching unique patient goals.

The NHS in England and its shared decision making journey

Shared decision making was originally described by the Picker Institute in England in the early 1980s. Focus was placed on a patient centred approach rather than a solely collaborative approach between the healthcare professional and the patient. Since then, this concept of increasing patient centred care has been gaining increasing momentum with policy makers and the public. It is now a core component of improving healthcare quality in the Health Act 2012. This sets out initial recommendations to involve patients in their own care by increasing choice and control. ‘No decision about me, without me’ enhanced the message that all providers of care needed to integrate patient involvement as an essential component of design, development and improvement.

One of the biggest levers to change will be the movement towards outcome measures, especially measured from the patient perspective and experience. As the commissioning processes within the NHS change, providers will be mandated to include patient experience as an outcome measure and to be penalised financially is these are unsatisfactory. At present the most common cause of complaints within the health services is the lack of information provided to the patients about their health condition and management. Therefore, by patients becoming active participants in their own health, it not only will patient satisfaction improve, but also an expected increase in compliance and concordance, resulting in a positive impact on long-term health outcomes.

In practice, health professionals need to have the ability to identify patients who prefer a more active role, over those with preferences for a more passive role in their management plan. Time constraints during short clinical consultations are not conducive to deciding which categories patients fall within. Patients with long-term conditions have been identified as an examplar for shared decision making and as a result the care pathways for diabetes and respiratory diseases have evolved nationally in the United Kingdom.