Patient participation
Patient participation is a trend that arose in answer to medical paternalism. Informed consent is a process where patients make decisions informed by the advice of medical professionals.
In recent years, the term patient participation has been used in many different contexts. These include, for example, clinical contexts in the form of shared decision-making, or patient-centered care. A nuanced definition of which was proposed in 2009 by the president of the Institute for Healthcare Improvement, Donald Berwick: "The experience 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.
Patient participation is also used when referring to collaborations with patients within health systems and organisations, such as in the context of participatory medicine, or patient and public involvement. While such approaches are often critiqued for excluding patients from decision-making and agenda-setting opportunities, lived experience leadership is a kind of patient participation in which patients maintain decision-making power about health policy, services, research or education.
With regard to participatory medicine, it has proven difficult to ensure the representativeness of patients. Researchers warn that there are "three different types of representation" which have "possible applications in the context of patient engagement: democratic, statistical, and symbolic." The idea of representativeness in patient participation has had a long history of critique. For example, advocates highlight that claims that patients in participatory roles are not necessarily representative serve to question patients' legitimacy and silence activism. More recent research into 'representativeness' call for the onus to be placed on health professionals to seek out diversity in patient collaborators, rather than on patients to be demonstrably representative.
Effects
Patient participation increases accessibility, increases the safety of patients, and increases patient satisfaction, while also causing healthcare providers to have more empathy and better communication skills. Furthermore, better communication ensures that patients feel appreciated, supported, and understood which fosters a better patient-doctor relationship.In shared decision-making
Several factors help increase patient participation, including understandable and individual adapted information, education for the patient and healthcare provider, sufficient time for the interaction, processes that provide the opportunity for the patient to be involved in decision-making, a positive attitude from the healthcare provider towards patient participation, and the healthcare provider seeing the patient's knowledge as useful and complementary to their own. Patient advocacy by nurses can help ensure a patient's individual attributes, wishes and values are represented in decision-making.Training patients in communication skills can increase patient participation and allow them to receive more information in visits without increasing the duration of visits, though there is little evidence than such training improves outcomes. It is unclear what the best form of communication skills training to increase patient participation is but many approaches are effective. Skills covered by communication skills training include presenting information, checking understanding, asking questions, expressing concerns, and stating preferences.
Prior to recent advances in technology, patient participation was limited to shared decision-making , a form of participation that occurred specifically between a patient and their physician in clinical practice, but can be regarded as a step forward. While variation exists in how patients are involved in the design and development of patient decision tools, prioritizing user involvement in needs assessment, reviewing content development, prototyping, and pilot and usability testing benefits the development of these tools.
Changes in modern technology now allow computers to play an increasingly important role in healthcare decision-making. Examples of artificial intelligence technology used in healthcare include IBM's Watson Health, which is intended to assist in the diagnosis and treatment of difficult illnesses or disease. One of Watson's objectives is to highlight findings developed by Watson's computing skills and access to everyday information and give concrete suggestions that are tailored to the expertise of the physician, type of ailment, and needed level of care. Physicians can use ailment-specific programs such as the Watson for Oncology app, which is aimed at the detection and treatment of tumors. Artificial intelligence is being used more frequently in patient participatory healthcare.
The success of shared decision making and partnering with consumers including patients has been suggested to be related to addressing power imbalances. Examples of where these imbalances are challenging include during patient-recruitment and in what is involved in a decision making process.
Formation of health policy as stakeholders
, 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 led 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 the 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 patient and public involvement have been seen critically; in addition to those under health technology assessment 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 warns that clinicians, delivery systems, and policymakers 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. More attention to evaluation might better distinguish successful cases from less-successful ones.
In health technology assessment
uses systematic methods to evaluate the properties and effects of a health technology, such as tests, devices, medicines, vaccines, procedures, or programs. Patient participation in HTA is an approach which aims to include patients in the process. 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. "anufacturers aim to price drugs within the ranges health systems are willing to pay for this additional benefit. This method of 'health technology assessment' is used widely across Europe, most notably with the UK and its National Institute for Clinical Excellence."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 that are good value for money, understanding patients' needs, preferences and experiences is essential.
When patients take part in HTA, their knowledge gained from living with a condition and using treatments and services can add value to an HTA. Sometimes they are called experience-based experts or lay experts. Patients can add value to HTAs by providing real world insights highlighting outcomes that matter, addressing gaps and uncertainties in the published literature, and contributing to the value construct that shapes assessments and decisions.