Search Results

Mary Alice Scott and Richard Wright’s chapter explores the intersections of seemingly opposing understandings of health—as a “right” or a “responsibility”—in health care professionals’ commentaries on ACA implementation in a formerly free clinic in southern New Mexico. The concepts of co-responsibility and of patient engagement—increasingly central to health care and other social programs globally— were reflected in staff framing of health care problems, clinic activities, and conceptualizations of patients. Patient engagement requires motivating patients to increase participation in their own health care and empowering them to develop self-efficacy. As this chapter shows, there is often a mismatch between provider expectations of shared responsibility and the highly constrained actions of patients, who in this study confronted structural barriers including being homeless, lack of regular transportation, and undocumented immigration status.

Recent years have witnessed a growing discussion of the concept of patient and family engagement. This chapter explores the relationship between this concept, patient-centred care, and shared decision making (SDM). Each concept has at its core the notion of partnership between patients, families, and health professionals. Patient and family engagement and patient-centred care describe complementary and overlapping concepts, both of which also encompass SDM. However, patient and family engagement goes further by also encompassing partnership in organizational design and governance and policymaking. These ideas describe organizational-level responses which we think are required if progress is to be achieved. It is insufficient for organizations to write mission statements that mention patient centered care without at the same time evaluating the care that their providers are delivery, from the perspective of patients and their carers. Embracing this wider concept of patient engagement could help advance a broader implementation of SDM.

In the United States, clinical interventions and regulatory health institutions promote patient engagement and empowerment as a novel transformation in healthcare delivery, with the promise of eliciting increased patient participation in their own health care. The concept of patient empowerment, however, obscures how closely related this discourse is to established doctrines of patient compliance/adherence. Empowerment reconstitutes the fundamentally authoritarian ideology of adherence and compliance into a neoliberal ideology of self-actualization and self-management. This chapter explores how communities of people living with type 1 diabetes have designed their own diabetes management tools, exemplifying empowered and self-managing patients. Their efforts are a patient-led response to significant gaps in diabetes care in current commercial devices and regulatory restrictions. These self-designed diabetes systems expose the limits of regulatory and commercial commitments to patient empowerment. Moreover, the institutional demands on the individual to achieve empowerment neglect the social, economic, and political obstacles for many to manage their chronic health conditions.

At a time when patient and family engagement in health care is rapidly expanding, patients and patient advocacy groups have increasing opportunities to advance shared decision making (SDM). We suggest that patients and patient groups play a critical role in building capacity for SDM in two main ways. Firstly, patients and patient advocacy organizations can prepare patients and families for realizing their roles in the SDM process by utilizing patient and family networks to educate them about SDM. They can help patients become more informed for the trade-off process by clarifying key values and preferences related to specific conditions. Secondly, patients and patient advocacy organizations can serve as partners to health care organizations, researchers, and decision tool developers as they create SDM processes and tools that are patient-centered and likely to be adopted by patients and families. Integrating SDM into health care is necessary to achieve person-centered, high quality care.

Recently, there has been unprecedented commitment to partnering with patients to shape research from conceptualization to dissemination. The underlying belief is that engaging patient partners can influence research to be more patient-centered, effective, and ultimately useful to the broader community. Some evidence suggests partnership with patients improves the relevance of the research agenda, the appropriateness of research conduct, and the dissemination and uptake of findings. Yet, practical challenges for both patients and researchers—uncertainty about the process, timeline implications, resource limitations—impede progress. This chapter provides an overview of the ‘what, when, and how’ of partnering with patients to accelerate impactful and valued research across contexts.

Chapter 4 focuses on a second case study: healthcare in the digital age. Healthcare, much like ecommerce, has become data-centered. In this environment, the electronic health record (EHR) has become the focal point of medical activities, and its accuracy has become vital to high-quality healthcare. As evidenced in the fictional scenario opening the chapter as well as the numerous true events described throughout the chapter, the reality is one in which EHRs are fraught with errors, which can give rise to disputes between doctors and patients, discrimination, billing errors, malpractice, and erroneous public health policies. Patient engagement could help correct many of these errors, but current design of EHRs does not allow for effective two-way communication and the correction of errors by patients. The chapter uncovers the urgent need for online dispute resolution and prevention avenues, which at this stage are unavailable.

SBIRT (screening, brief intervention, and referral to treatment) is a comprehensive and integrated public health approach that aims to address hazardous and harmful substance use in patients through universal screening for substance misuse risk and the subsequent delivery of appropriate evidence-based interventions to reduce this risk. SBIRT has been implemented throughout all 50 states in a wide variety of medical settings. Thus far, over one million people across the country have been screened for substance use using SBIRT practices. SBIRT has also been implemented internationally. SBIRT is predicated on the premise that, like other chronic diseases, substance use falls along a clinical spectrum ranging from low to high risk. Patient substance use can be stratified across increasing risk levels that correlate with an appropriate disease state extending from abstinence to a diagnosable substance use disorder. Implications for treatment and prevention programs are discussed.

By looking at patient reported barriers to shared decision making (SDM), this chapter considers how clinicians and health care providers can best prepare patients to become involved in SDM. There are many methods proposed – these include question prompts that encourage patients to ask questions to clinicians. Some of these propmts are general question, other forms are condition-specific: both types of prompts are being evaluated in further research. Other methods to prepare patients include the provision of knowledge tools such as patient decision aids, either before clinical encounters or within visits. Patients’ attitudes towards the concept of being active participants in health care decision making is a key patient reported barrier. This chapter provides examples of existing interventions that aim to prepare patients for SDM, and considers how future interventions can best prepare patients, based on the key patient reported barriers.

Primary care providers at Massachusetts General Hospital (MGH) have been able to prescribe patient decision aids (PDAs) through the electronic medical record since 2005. However, several providers recognized that they did not always remember to order programs and were interested in new ways to get the tools to patients. This prompted a care redesign project with one primary care practice that engaged patients in self-ordering of decision aids. Over the course of six months, approximately 7% of patients ordered programs, and the most popular programs dealt with mental health issues. In contrast, during the same period providers ordered programs for about 3% of visits, with the most popular program being testing for prostate cancer. The results higlighted the need to elicit and address patients’ issues during annual visits, which can often get dominated by medical providers’ agenda.

‘Patient-reported measures’ collect information about service users’ experiences of health care, including their experiences of decision making processes. Patients are well placed to say whether they have been appropriately involved in decisions. The patient voice is usually sought using surveys, although other options are available. There is no universally accepted measure of shared decision making (SDM). We describe 23 measures, some of which focus on decision influences, others the decision process, and others on decision outcomes. When selecting appropriate measures, clinicians, managers, and researchers should consider whether the tool is short and practical; whether the questions are valid, reliable, and designed with input from patients; and which components of SDM are measured and how the information can be used for improvement. Organizations can do many simple things to use these tools routinely as part of a balanced scorecard measuring quality, alongside clinical indicators and measures from professionals and other stakeholders.

In the USA, shared decision making (SDM) has become a high profile health policy goal since its inclusion in the Patient Protection and Affordable Care Act (ACA). Incentivizing clinician performance has been suggested as a means of promoting SDM uptake. After reviewing recent documents discussing the ACA, incentives, and SDM, we identified some common themes: (1) there was consensus around the definition of both SDM and patient decision aids, (2) there was no agreement regarding the best way to measure SDM; also the volume of patient decision aids was mentioned as a means of measurement, despite this being a poor proxy of SDM activity, (3) there was no agreement and a lack of detail regarding the type of incentive to use. Further refinement of incentive strategies are required if this approach is to be successful. In addition, the ethics of this approach warrants further consideration.

In this chapter, five junior physicians from four countries reflect on their experiences of learning about shared decision making (SDM) and integrating the principles into their own practice. They describe current weaknesses in the training provided to junior physicians that impedes their adoption of SDM. They also highlight the effects of a culture that does not prioritize SDM. At the same time, however, their tone is one of optimism. The authors provide practical examples of what junior physicians can do now to engage patients in sharing decisions, promote the concept of SDM, develop the skills required to practise SDM well, and effect change in the culture and practices of their working environments. They also have a strong message for those who educate physicians as to strategies for more effectively embedding the teaching of SDM alongside the teaching of clinical skills.

We refer to ‘encounter tools’ to draw a distinction from tools that have been primarily designed to give patients information prior to their visits to clinicians, (patient decision aids; PDAs) and which we consider to be pre-encounter tools. Although there is consistent evidence that pre-encounter PDAs increase patient knowledge, data showing that they lead to changes in communications is less robust and often based on response to a single survey item. There is no body of evidence from observational research that pre-encounter tools lead to shared decision making (SDM). Published evidence shows that tools designed to promote collaboration and deliberation facilitate SDM. Such tools must be based on high-quality synthesis of research evidence and be brief enough to use in conversations between patients and clinicians. Gathering more data about how to motivate clinicians to use these tools and get them embedded into clinical practice is the next task.

The purpose of this chapter is to summarize what clinicians should know about patient decision aids (PDAs) and to identify areas where further studies are needed. PDAs present evidence in user-friendly formats to help patients understand their treatment, screening, or prevention options, make specific, deliberative choices, and participate in decision making. PDAs are used in preparation for the consultation or during the consultation using paper based booklets, video-cassettes, DVDs, and internet-based materials. When PDAs are used (1) patients have improved decision quality and decision making processes, (2) patients and clinicians have more engaged interactions, (3) patients do not experience a change in their health outcomes and they may or may not change their chosen option, and (4) the impact on the health care system is not yet established. There are inventories of publicly available PDAs.

Both shared decision making (SDM) and quality improvement are intended to put the patient at the centre of health care and improve the outcomes that matter to them. Shared decisions help health care systems shift from a default one-size-fits-all approach to a focus on individualized interactions between patients and clinicians that co-produce evidence-informed health plans. These plans should account for the wishes, values, and circumstances of individual patients. Quality improvement offers an approach for adapting evidence and best practices to local organizational contexts. This approach can be extended to individual patients. This chapter describes the basics of improvement and provides examples of how quality improvement has been used to advance SDM at an organizational/provider and individual/patient level.