User:Colin30/sandbox

Here is a list of resources that I'm considering

1. Systematic Review of Involving Patients in the Planning and Development of Health Care. Crawford M, Rutter D, Manley C, Weaver T, Bhui K, Fulop N, Tyrer P. Brittish Medical Journal. 2002, vol 325 (7375) pp: 1263

2. Developing a Quality Criteria Framework for Patient Decision Aids: Online International Delphi Consensus Process. Elwyn G, O'connor A, Stacey D, Volk R, Edwards A, Coulter A, Thomson R, Barratt A, Barry M, Bernstein S, Butow P, Clarke A, Entwistle V, Feldman-Stewart D, Holmes-Rovner M, Llewellyn-Thomas H, Moumjid N, Mulley A, Ruland C, Sepucha K, Sykes A, Whelan T. BMJ. DOI 10.1136/bmj.38926.629329.AE

3. The Impact of Patient and Public Involvement on UK NHS Health Care: a Systematic Review. Mockford C, Staniszewska S, Griffiths F, Herron-Marx S.

4. Assessing Patient Organization Participation in Health Policy: A Comparative Study in France and Italy, Souliotis K Agapidaki E Peppou L Tzavara C Varvaras D Buonomo O Debiais D Hasurdjiev S Sarkozy F, Int J Health Policy Manag. Int J Health Policy Manag 2017 vol: 6 (6) pp: 1-11

"Patient participation is a multidimensional concept originating from the widespread consumer movement in 1960’s, which was centered on consumers’ right to safety, to be informed, to choose and to be heard.1 Moreover, patient participation pertains to a wide range of healthcare aspects, such as decision-making, self-medication, self-monitoring, patient education and goal setting, among others. In this rationale, patient participation is conceptualized as the process that allows patients to be an integral part of the decision-making course that influences their health.3,4 Congruent with this, they can contribute to a wide range of activities from formulating treatment plans to shaping germane policies. Patient participation in developing health policies refers to individuals’ involvement in every step of planning, development and implementation of healthcare programs, interventions and services.5,6 This approach implies that patient participation may occur on various levels: (i) the individual or micro level, wherein the patient participates as a member of the healthcare team in decisions that directly affect his/her health (eg, clinical decision-making); (ii) the meso level, which refers to engagement in health decision- making on a local or organizational level (eg, local health authorities and/or hospital organizations), and (iii) the macro level, which involves participation in health issues on a federal, national or international level.7-10 The importance of patient involvement in every stage of the healthcare process has been substantiated.11,12 There are 2 lines of argumentation justifying patient organization participation in health policy decision-making. The first is political and stems from the democratic values of transparency and accountability13; the second is health-related and derives from the principle of equity and the health promotion approach.14 Patients are supported to increase the control over the factors which influence their health and become more active in the development, planning, delivery and evaluation of health services.15 Indeed, existing research indicates that increased patient participation is linked to enhanced quality of healthcare services, elevated effectiveness and efficiency of health systems and better population health outcomes.16-19"

5. Assessing Patient Participation in Health Policy Decision- Making in Cyprus, Souliotis K Agapidaki E Peppou L Tzavara C Samoutis G Theodorou M, Kerman University of Medical Sciences, 2016 vol: 5 (58) pp: 461–466.

"research evidence suggests that patient participation is a fundamental component for designing effective and sustainable healthcare systems.9,10 Researchers advocate patients involvement in health policy decision- making as equal partners in order to ensure that population health needs are incorporated in the policy agenda, as well as that the services delivered and policies implemented are addressing these needs effectively.11-13 Increased patient involvement is associated with improved quality and safety of healthcare services, higher cost-effectiveness and better health outcomes.12,14 In this reasoning, patient involvement is indispensable in the development and implementation of health policies.13,15,16 In this context, many governmental and non-governmental organizations across Europe have carried out campaigns aiming to raise patient awareness with regard to participating in health policy decision-making.16 Moreover, relevant laws and regulations, mostly at local or federal levels, have been formulated in most European countries in order to facilitate patients’ interaction with health authorities and thus to contribute effectively in health policy decision-making.15,17-20 This is in line with previous studies, suggesting that targeted interventions to support patient organizations in advocacy strategies are necessary to improve the impact of patient participation in health policies.30,31"

6. Public and Patient Participation in Health Care and Health Policy in the United Kingdom. Tritter J. Health Expectations. 2011 vol: 14 (2) pp: 220-223

7. Porto Biomedical Journal Editorial Public and Patient Participation in Health Policy, Care and Research. De Freitas C, Porto Biomed. J. 2017 vol: 2 (2) pp: 31-32

8. How Best to Engage Patients, Doctors, and Other Stakeholders in Designing Comparative Effectiveness Studies. Hoffman A, Montgomery R, Aubry W, Tunis S., Health Affairs. 2010

9. Patient And Family Engagement; A Framework For Understanding The Elements And Developing Interventions And Policies

"Policy makers can also create mechanisms by which patients can provide input and help shape public policy, such as public deliberation, town hall meetings, public hearings, or regulatory comment processes. Similarly, foundations, nonprofit organizations, and government agencies can create funding mechanisms requiring and supporting patient participation in societal decisions and priority setting. Clinicians, delivery systems, and policy makers cannot assume that patients have certain capabilities, interests, or goals, nor can they dictate the pathway to achieving patients’ goals. However, the range of opportunities along the continuum is best determined based on the topic at hand and defined and created with patients’ participation. Patients’ engagement in policy, which is often described as “citizen” or “public” engagement, helps ensure that the health care system writ large is oriented around and responsive to patients’ perspectives. Patients collaborate with community leaders and policymakers—for instance, representatives from governments, health plans, and employers—to solve community and social problems, shape health care policy, and set priorities for the use of resources. Patients also participate in health and clinical research. At this level, engagement may include individual patients as well as representatives of consumer organizations who speak on behalf of a general constituency. Ideally, at the partnership end of the continuum for this level, patients or their representatives set priorities and make policy and pro- gram decisions. However, it is still rare for patients to have more than a token amount of power and influence.Policies and practices that positively influence patient engagement in direct care include open family presence policies—that is, hospital policies that enable families to visit twenty-four hours a day;26 bedside rounding—that is, conducting physician and interdisciplinary rounds at the patient’s bedside;27 having nurses who are coming on and going off duty give their change of shift report at the patient’s bedside;28 patient centered discharge planning;29 and electronic health records that patients can access and edit.30 Organizational policies and practices can further promote engagement by creating expectations that patients will serve as advisers and decision makers, including on quality improvement teams, patient safety and error committees, and patient- and family-centered care councils."

Outline

1. Define the term “patient participation” as it pertains to health policy as stakeholders

a) "Patient participation is a multidimensional concept originating from the widespread consumer movement in 1960’s, which was centered on consumers’ right to safety, to be informed, to choose and to be heard.4

b) “Moreover, patient participation pertains to a wide range of healthcare aspects, such as decision-making, self-medication, self-monitoring, patient education and goal setting, among others.4

c)“Patient participation in developing health policies refers to individuals’ involvement in every step of planning, development and implementation of healthcare programs, interventions and services.”4

d) "This approach implies that patient participation may occur on various levels: (i) the individual or micro level, wherein the patient participates as a member of the healthcare team in decisions that directly affect his/her health (eg, clinical decision-making); (ii) the meso level, which refers to engagement in health decision- making on a local or organizational level (eg, local health authorities and/or hospital organizations), and (iii) the macro level, which involves participation in health issues on a federal, national or international level.4

2. Provide examples of research that supports this definition.

a) “Existing research indicates that increased patient participation is linked to enhanced quality of healthcare services, elevated effectiveness and efficiency of health systems and better population health outcomes”4

b) Increased patient involvement is associated with improved quality and safety of healthcare services, higher cost-effectiveness and better health outcomes.5

3. Discuss specific ways that patient participation has already influenced health policy

a) Researchers advocate patients involvement in health policy decision making as equal partners in order to ensure that population health needs are incorporated in the policy agenda, as well as that the services delivered and policies implemented are addressing these needs effectively.5

b) Patients collaborate with community leaders and policymakers—for instance, representatives from governments, health plans, and employers—to solve community and social problems, shape health care policy, and set priorities for the use of resources. Patients also participate in health and clinical research.9

c Policies and practices that positively influence patient engagement in direct care include open family presence policies—that is, hospital policies that enable families to visit twenty-four hours a day; bedside rounding—that is, conducting physician and interdisciplinary rounds at the patient’s bedside; having nurses who are coming on and going off duty give their change of shift report at the patient’s bedside; patient centered discharge planning; and electronic health records that patients can access and edit.9

4. Discuss the mechanisms by which policymakers can involve patient participation in health policy.

a) "Policy makers can also create mechanisms by which patients can provide input and help shape public policy, such as public deliberation, town hall meetings, public hearings, or regulatory comment processes.9

b) Hospital policies and practices can further promote engagement by creating expectations that patients will serve as advisers and decision makers, including on quality improvement teams, patient safety and error committees, and patient- and family-centered care councils."9

c) Similarly, foundations, nonprofit organizations, and government agencies can create funding mechanisms requiring and supporting patient participation in societal decisions and priority setting. Clinicians, delivery systems, and policy makers cannot assume that patients have certain capabilities, interests, or goals, nor can they dictate the pathway to achieving patients’ goals.9

Proposed rough draft (ok to submit)

Patient participation, as it pertains to the formation of health policy, is a concept that has evolved over the years and has increasingly relied on patients as stakeholders. Research has demonstrated that aspects of patient participation in health policy originated from the consumer advocacy movement, which was centered around promoting consumer safety, providing access to information and advocating for citizens to be included in decisions that affect public health.4 Since that beginning, patients have continued to play an increased role in creating and evaluating health policy, and 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, just to name a few areas.4 Patient participation in health policy can impact many different levels of the health care system, from the hospitalized individuals who participate as members of the medical team to make shared decisions, to the systems level where patients participate in the design of organizational and governmental policies.

Increased patient participation in health policy provides numerous benefits. Evidence shows that patient participation is linked to improvements in patient satisfaction, quality and safety, cost savings and population health outcomes.4,5,9 Whether on the local, state, federal or international level, studies show that involving patient participation in health policy research can ensure public health needs are accurately incorporated into policy proposals.5 When solicited for participation by policymakers and industry leaders, patients can have a meaningful impact on 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 information on the perceived quality and accessibility of health care services. Furthermore, patient satisfaction scores from these surveys has 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, and lead to the widespread utilization of electronic medical records that patients can access and edit.9 Policymakers can create more mechanisms by which patients can provide input and 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 patient- and family-centered care councils."9 Similarly, foundations, nonprofit organizations, and government agencies can create funding mechanisms requiring and supporting patient participation in societal decisions and priority setting. Clinicians, delivery systems, and policy makers cannot assume that patients have certain capabilities, interests, or goals, nor can they dictate the pathway to achieving patients’ goals.9

Transatlantic examples are given below (see also Health advocacy).

The formation of health policy as stakeholders (final draft)

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 impact 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 ensure that public health needs are accurately incorporated into policy proposals. When solicited for participation by policymakers and industry leaders, patients can have an impact on 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. Clinicians, delivery systems, and policy makers cannot assume that patients have certain capabilities, interests, or goals, nor can they dictate the pathway to achieving patient's goals.

Transatlantic examples are given below (see also Health_advocacy).