Patient participation

Patient participation is a trend that arose in answer to perceived physician paternalism. However, only rarely can unchecked physician paternalism be justified, and unlimited patient autonomy would presumably be equally abhorrent. Patient participation is a trend that arose in answer to perceived physician paternalism. However, only rarely can unchecked physician paternalism be justified, and unlimited patient autonomy would presumably be equally abhorrent. In recent years, the term 'patient participation' has been used in many different contexts. These include, for example: participatory medicine, health consumerism, and patient-centered care. For the latter context, i.e. patient-centered care, a more nuanced definition was proposed in 2009 by the president of the Institute for Healthcare Improvement Donald Berwick: 'The experience (to the extent the informed, individual patient desires it) of transparency, individualization, recognition, respect, dignity, and choice in all matters, without exception, related to one's person, circumstances, and relationships in health care' are concepts closely related to patient participation. In the UK over the course of 2016 two new relevant terms have expanded in usage: Patient and Public Involvement (PPI) and Engagement (PPIE) in the sense of the older term coproduction (public services). Patient participation is a generic term, and thus no list can be exhaustive; nonetheless, the following description shall subdivide it into several areas where patients and/or their advocates have a role. Patient participation, as it pertains to the formation of health policy, is a process that involves patients as stakeholders, advisors and shared decision makers. The practice of engaging patients in health policy originated from the consumer advocacy movement, which prioritized consumer safety, access to information and public participation in public health programs. Depending on the context, patient participation in health policy can refer to informed decision making, health advocacy, program development, policy implementation, and evaluation of services. Patient participation in health policy can affect many different levels of the health care system. Hospitalized individuals may participate in their own medical care in an effort to make shared decisions. In other areas, patients act as advocates by serving as members of organizational and governmental policy committees. Increased patient participation in health policy can lead to improvements in patient satisfaction, quality and safety, cost savings and population health outcomes. Involving patient participation in health policy research can also ensure that public health needs are accurately incorporated into policy proposals. When solicited for participation by policymakers and industry leaders, patients can influence health policy, and both groups benefit from collaboration on goal setting and outcome measurement. By providing feedback in the form of survey responses, patients give community health officials and hospital leaders helpful feedback on the perceived quality and accessibility of health care services. Furthermore, patient satisfaction scores from these surveys have become an important metric by which hospitals are evaluated and compared to one another. Patient participation has driven the development of a variety of health policies, ranging from the expansion of hospital visitation hours to the implementation of patient-centered bedside rounding by hospital medical teams. Patient participation has contributed to improvements in the nurse-to-nurse handoff process by engaging with staff to discuss change-of-shift information at the patient's bedside. Patient participation in care coordination has also lead to the utilization of electronic medical records that patients can access and edit. By engaging with patients and patient advocacy groups, policymakers can support patients to shape public policy. Examples include facilitation of public participation in research, town hall meetings, public information sessions, internet and mobile-based surveys and open comment periods on proposed legislation. Hospitals promote patient participation by empowering patients to serve as advisers and decision makers, including on quality improvement teams, patient safety committees, and family-centered care councils. Similarly, foundations, nonprofit organizations, and government agencies can create funding mechanisms requiring and supporting patient participation in societal decisions and priority setting. Some aspects of PPI have been seen critically; in addition to those under HTA below, examples of general critical voices include a group of U.S. researchers presenting a framework in 2013 and a young Canadian speaker in 2018. The former warn that clinicians, delivery systems, and policy makers cannot assume that patients have certain capabilities, interests, or goals, nor can they dictate the pathway to achieving a patient's goals. The latter sees multiple potential conflicts of interest in the current arena of PPI. Patient participation in health technology assessment (HTA) is an approach to HTA which aims to include patients in the process of HTA. It is sometimes called consumer or patient engagement or consumer or patient involvement, although in HTA the latter term has been defined to include research into patients' needs, preferences and experiences as well as participation per se. In HTA, patient participation is also often used to include the participation of patient groups, patient advocates, and patients' families and carers in the process. As HTA aims to help healthcare funders, such as governments, make decisions about health policy, it often involves the question as to whether to use broadly defined health 'technologies', and if so, how and when; then patients comprise a key stakeholder in the HTA process. Additionally, because HTA seeks to assess if a heath technology produces useful outcomes for patients in real world settings (clinical effectiveness) that are good value for money (cost effectiveness), understanding patients' needs, preferences and experiences is essential.