Patient participation

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potential for conflict of interest (in relation to patient groups receiving funding from manufacturers), and lack of evaluation of patient participation. Facey et al. (2017) published the book on patient involvement in HTA to establish consistent terminology in the field and demonstrate a range of recognised approaches and methods found in published literature. Authors also highlighted the challenges of evaluation, rapid (short HTAs) and the problem of HTA bodies confusing patient input (information provided by patients and patient groups taking part in HTA) with patient-based evidence (robust research into patients' needs, preferences and experiences). The book itself is not open access, but the lead editor also published a paper on the topic six years before the larger collection. One of the issues for patient participation in HTA is that HTA has often been constructed as a scientific process which must remain free from the subjective input of patients. Likewise, Gauvin et al. report that their "analysis reveals that HTA agencies' role as bridges or boundary organizations situated at the frontier of research and policymaking causes the agencies to struggle with the idea of public involvement".

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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.

651:; however, both terms refer to a personalized health care experience that aims to increase collaboration between patients and providers, while increasing patient participation in their own health care. In addition to increased patient-physician interactions, Health 2.0 platforms seek to educate and empower patients through increased accessibility of their own health care information, such as lab reports or diagnoses. Some Health 2.0 platforms are also designed with remote medicine or telemedicine in mind, such as Hello Health. The advent of this communication method between patients and their medical providers is thought to change the way medicine is delivered, evidenced by a growing focus on innovating health technology, such as the annual Health 2.0 conference. One way Health 2.0 technologies can increase patient participation by actively engaging patients with their doctors is through the use of 557:

involving a mental health professional in the care of fertility patients, only some of the units have a social worker or psychologist on their permanent staff. The study also included a survey of 524 patients. These patients were asked to rate the units where they were treated on a scale of 0–3. Scores ranged from 1.85 to 2.49, with an average of 2.0, compared with the average score of 2.2 given by staff members. The difference was statistically significant. There were also statistically significant differences in the scores across the various dimensions of patient-centered care, according to the patients' socioeconomic background. In particular, the patients gave their lowest ratings to the emotional support dimension, while the staff members believed that the emotional support they provided stood out as a positive aspect of their work.

655:, which are electronic versions of a physician's after-visit summaries. Electronic health records can also include the ability for patients to communicate to their physicians electronically for scheduling appointments or reaching out with questions. Other ways electronic health records can enhance patient participation include electronic health records that alert physicians to potentially dangerous drug interactions, reducing time to review a patient's medical history in an emergency situation, enhanced ability for managing chronic conditions like hypertension, and reducing costs through increased medical practice efficiency. 460:

an HTA from scoping the questions asked about the health technology, providing input, interpreting the evidence, and drafting and communicating recommendations. It suggests that patient participation in HTA depends on two-way communication and is a dialogue for shared learning and problem-solving. The approach taken should be driven by the goal of participation. The most common way that patients take part in HTA is by providing written submissions and participating in expert meetings (for example as an equal member of an expert group or by attending an expert meeting to present information and answer questions).

378:(now Merative), 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. 339: 416:

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.

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patient outcomes as well as clinical trial enrollment and retention. For risks, it has been proposed that the inclusion of patient participation may lead to extended research times and increased funding for clinical trials, while also providing limited evidence that patient-centeredness decreased the ordering of low-value tests. Recent evidence also suggests that knowledge generated through patient-clinician partnerships is more specific to the subjects' context and is therefore more likely to be implemented.

439:, 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, 301:

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.

370: (SDM), 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. 573:. Following the institute's inception, Milken launched the FasterCures program, which "brings together patient advocates, researchers, investors and policymakers from every sector of the medical research and development system to eliminate the roadblocks that get in the way of a faster cure". The FasterCures program proposes patient-center improvements and advancements in the modern healthcare arena. 759:. Computer databases allow for the mass collection and dissemination of data. Registries, specifically, not only allow patients to access personal information but also allow physicians to review the outcomes and experiences of multiple patients who have received treatment with medicinal products. Furthermore, registries and patient participation have been particularly important to the development of 424:

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.

580:. PCORI is striving to systematize its evaluation metrics to prove where results show improvement. PCORI was created by provisions in the Patient Protection and Affordable Care Act of 2010. The 501(c) organization has faced a great deal of scrutiny over funding, specifically when it was revealed PCORI was funded by a new tax originating from the Affordable Care Act. 412:

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.

281:: "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. 751:

There has been an increased interest among healthcare providers, such as nurses, in cultivating patient participation. Due to this increased interest, studies have been done to assess the benefits and risks of patient participation and engagement in research. For benefits, patient engagement improves

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health applications is occurring at a rapid pace, with estimates of over 100,000 mobile applications available for use as of 2015. This boom in production has led to a developing concern regarding the amount of research and testing the application undergoes before going live, while others see promise

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In the Netherlands, there is a debate about the relative value of patient participation versus decisions without explicitly empowering patients. Bovenkamp is one of the most vocal opponents challenging patients as stakeholders in clinical guideline development. Adonis is more positive in her shorter

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In 2017, a book was published on patient involvement in HTA (eds. Facey KM, Hansen HP, Single ANV) bringing together research, approaches, methods and case studies prepared by 80 authors. It demonstrates that practices vary between HTA bodies, and patients can potentially contribute at every stage of

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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

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In Norway, Nilsen et al. were critical of patients' role in health policy and clinical guideline development in their Cochrane Intervention Review. Two other Norwegian researchers, though, in unison with the workshop findings above, expand the list of areas where patients' views matter: "The central

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Some aspects of patient and public involvement (PPI) have been seen critically; in addition to those under health technology assessment (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

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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

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In the US, trends in patient participation have been influenced by a variety of sources and previous political movements. One such source for patient participation in clinical research was the AIDS epidemic in the 1980s and 1990s. During the epidemic, AIDS activists argued not only for new clinical

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A 2019 study reported that "...other terms for research that is patient-oriented include 'patient-centred outcomes research,' 'user involvement,' 'patient and service user engagement,' 'consumer engagement,' 'community-based research,' 'participatory research' and 'patient and public involvement.'"

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A further issue for patient participation in HTA is that of the individual versus the group. Health Technology Assessment International (HTAi)'s list available for endorsement on values for patient involvement express this issue as "involvement ... contributes to equity by seeking to understand the

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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

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calling for an amendment to the social contract to boost patient participation, citing a historical precedent: "We need only look back to the human immunodeficiency virus (HIV)/AIDS epidemic during the 1980s to experience the power of patient advocacy combined with the dogged pursuit of scientific

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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

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In Israel, a multicenter study at eight fertility units located in hospitals across the country found that unit directors are familiar with the patient-centered care approach and in general support it. Nonetheless, interviews with the unit directors revealed that, despite the importance of

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Kelly et al. explain (with their original citations shown here in brackets): "From the moment Archie Cochrane linked questions of clinical effectiveness to cost effectiveness and cost utility analysis was chosen as the basis for assessing value for money, EBM and HTA have been framed within the

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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

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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

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Although patient participation has been adopted and developed by a variety of HTA bodies around the world, there are limitations and criticisms of its use. These include concern about how and when to involve patients, the burden of participation for patients, representativeness of patients, the

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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 (e.g. implications of

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With cancer being a prime target for precision medicine, patients are increasingly being recruited to participate in clinical trials to help find cures. An activist has reported that "patient involvement in research has also become a political goal, strengthened by the joint declaration of the

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However, HTA would be better understood as a policy tool which critically reviews scientific evidence for a local context and this review is shaped by those involved in the process. There are many ways that public participation in HTA, including patients, can be implemented. In fact, an entire

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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

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is a developing term, and a 2013 open-access book provides a comprehensive description of the trend toward registries and their networks, i.e. the "broader research collaboratives that connect individual registries". Organizations such as the National Pediatric Cardiology Quality Improvement

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mHealth is bringing promising solutions to meet the growing demand for care. With more and more evidence suggesting that the most effective treatment models involve specialized, multi-faceted approaches, and require a variety of materials and effort on both the physician's and patient's end.

683:, and can be especially significant in providing services to low resource, rural communities. Patient reminders have increased patient participation in attending preventative screenings, and it is possible that similar reminders distributed automatically via web-based applications, such as 790:

Precision medicine will change the conduct of clinical trials, and thus the role of patients as subjects. "Key to making precision medicine mainstream is the ongoing shift in the relationship between patients and physicians" comments N. J. Schork from the Venter Institute in

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serve as both a method for increasing health literacy, and as a bridge for patient-physician communication (thus increasing patient participation). There are a broad number of ways to increase participation through the use of web-based and mobile applications. Live

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trial models, but for the importance of additional social service groups to support a wider range of potential human subjects. Since then, the FDA has taken several steps to include patients earlier in the drug development process. The authorization of the

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utilitarian philosophical tradition. Utilitarianism is premised on the view that actions are good insofar as they maximize benefit for the greatest number . This is not necessarily congruent with what is in the best interest of an individual patient ."

522:(EUPATI). Furthermore the Danish workshop reported that the European Medicines Agency would be "measuring the impact of patient involvement", this being crucial to establishing credibility. And indeed, measurement is provided for in the place cited. 447:

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.

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paper. Caron-Flinterman goes into more detail in her dissertation. She is cited in a more recent open-access survey laying out researchers' various views, especially on the ethical dimensions of engaging patients as partners within research teams.

473:"typology of issues" has been developed by Gauvin et al., in which each type is "related to the most appropriate public involvement methods". Facey (2017) built on this work in Chapter 5 to describe it in detail for patient participation in HTA. 646:

is the use of web and social networking technologies to facilitate patient and physician interaction and engagement, usually through an online web platform or mobile application. Health 2.0 is sometimes used interchangeably with the term

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benefits and side effects, variation in clinical practice) highlighting outcomes that matter, addressing gaps and uncertainties in the published literature, and contributing to the value construct that shapes assessments and decisions.

519: 2454:

Borup G, Bach KF, Schmiegelow M, Wallach-Kildemoes H, Bjerrum OJ, Westergaard N (May 2016). "A Paradigm Shift Towards Patient Involvement in Medicines Development and Regulatory Science: Workshop Proceedings and Commentary".

592:(PM), some opinion leaders have spoken up for reassessing the value of patient participation to be seen as a driver of PM. The Chancellor of the University of California, San Francisco, for instance, wrote an editorial in 1189:

Castro EM, Van Regenmortel T, Vanhaecht K, Sermeus W, Van Hecke A (December 2016). "Patient empowerment, patient participation and patient-centeredness in hospital care: A concept analysis based on a literature review".

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Workshops in Denmark and Austria have resulted in calls to action to reinforce patients' role in SDM and health advocacy. The Danish workshop recommended the new Toolbox of resources for patient participation from the

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Originally an EU project, EUPATI started receiving new funding in February 2017 under the direction of EPF, an umbrella organisation with two-thirds public and one-third private funding that works with patients'

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resulted from the most recent event in a workshop series continuing through 2019 entitled "Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship held from 10–16 March 2017.

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Carman KL, Dardess P, Maurer M, Sofaer S, Adams K, Bechtel C, et al. (February 2013). "Patient and family engagement: a framework for understanding the elements and developing interventions and policies".

864:(IOM) defined patient-centered care as "providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions." 363:

is but many approaches are effective. Skills covered by communication skills training include presenting information, checking understanding, asking questions, expressing concerns, and stating preferences.

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in patients having greater access to treatment materials. Some of that concern includes whether or not the patient will continue to use the mobile application specific for their treatment needs over time.

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Changes in modern technology now allow computers to play an increasingly important role in healthcare decision-making. Examples of artificial intelligence (AI) technology used in healthcare include IBM's

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Håkansson Eklund J, Holmström IK, Kumlin T, Kaminsky E, Skoglund K, Höglander J, et al. (January 2019). ""Same same or different?" A review of reviews of person-centered and patient-centered care".

2623:"Patient-driven research agenda setting in the Netherlands, A qualitative study from the perspective of patient organizations and umbrella patient organizations on patient-driven research agenda setting" 476:

Sociologist Andrew Webster sees the problem as "a failure to recognise that evaluation is a contested terrain involving different sorts of evidence related to different sorts of context (such as the

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Facey K, Boivin A, Gracia J, Hansen HP, Lo Scalzo A, Mossman J, et al. (July 2010). "Patients' perspectives in health technology assessment: a route to robust evidence and fair deliberation".

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Facey K, Boivin A, Gracia J, Hansen HP, Lo Scalzo A, Mossman J, et al. (July 2010). "Patients' perspectives in health technology assessment: a route to robust evidence and fair deliberation".

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Two of the reasons to cultivate patient participation in clinical research have been the growth of patient organizations along with the development of databases and the concept of a patient or

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According to early career researchers working in the field of patient engagement in research, this research approach is still in its infancy and will not become mainstream until around 2023.

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discovery and translation; clearly, motivated patients and scientists as well as their advocates can influence political, scientific, and regulatory agendas to drive advances in health."

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for patients afflicted with a rare disease. This registry provides information to the patients and allows physicians to contact potential patients for enrollment in clinical trials.

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arena for patient participation is the meeting between patient and health professional, but other important areas of involvement include decisions at the system and policy levels".

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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.

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Patients have a new resource to help them navigate the clinical trials landscape and find understandable summaries of medical research in the OpenTrials database launched by the

721:. This includes agenda-setting, clinical guideline development, and clinical trial design. That is to say: patients act not only as sources of data but rather active designers. 2205:

Gauvin FP, Abelson J, Giacomini M, Eyles J, Lavis JN (May 2010). ""It all depends": conceptualizing public involvement in the context of health technology assessment agencies".

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Another issue for understanding patient participation is that many patients simply find a new healthcare provider rather than continue in a contentious medical relationship.

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diverse needs of patients with a particular health issue, balanced against the requirements of a health system that seeks to distribute resources fairly amongst all users".

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Menon D, Stafinski T, Dunn A, Short H (February 2015). "Involving patients in reducing decision uncertainties around orphan and ultra-orphan drugs: a rare opportunity?".

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Patient participation increases accessibility, increases the safety of patients, and increases patient satisfaction, while also causing healthcare providers to have more

2073:"Supporting quality public and patient engagement in health system organizations: development and usability testing of the Public and Patient Engagement Evaluation Tool" 744:

in 2012 included the Patient-Focused Drug Development (PFDD) initiative to provide the FDA with a way of hearing the patients' perspectives and concerns. Similarly, the

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Patient participation can include a broad spectrum of activities for human subjects during clinical trials and has become associated with several other terms such as

768: 4397: 3712: 3462: 3191: 1595: 3141: 2547: 284:

Patient participation is also used when referring to collaborations with patients within health systems and organisations, such as in the context of

3274:"Mobile Applications for Patient-centered Care Coordination: A Review of Human Factors Methods Applied to their Design, Development, and Evaluation" 2523:

Draft Work plan for the European Medicines Agency Human Scientific Committees' Working Party with Patients' and Consumers' Organisations (PCWP) 2016

4507: 4567: 1976: 3116: 3415:"The RAND/PPMD Patient-Centeredness Method: a novel online approach to engaging patients and their representatives in guideline development" 3166: 748:(EMA) has been attempting to incorporate patient perspectives during the evaluation of medicinal products by the EMA scientific committees. 831: 577: 296:

is a kind of patient participation in which patients maintain decision-making power about health policy, services, research or education.

232: 4570: 2622: 4120: 764: 1866:"Patients' perspectives can be integrated in health technology assessments: an exploratory analysis of CADTH Common Drug Review" 3966:"Patient Engagement Practices in Clinical Research among Patient Groups, Industry, and Academia in the United States: A Survey" 2522: 1377:"User Involvement in the Design and Development of Patient Decision Aids and Other Personal Health Tools: A Systematic Review" 4488: 4154: 3687: 3005: 2503: 2055: 946: 610: 546: 333: 776:

Collaborative have generated significant improvements in clinical outcomes through a commitment to co-creation of research.

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Engaging Patients in Information Sharing and Data Collection: The Role of Patient-Powered Registries and Research Networks

918: 292:. While such approaches are often critiqued for excluding patients from decision-making and agenda-setting opportunities, 2764: 2127: 1287:"Promoting patient participation in healthcare interactions through communication skills training: A systematic review" 1046:

Scholz B (5 May 2022). "We have to set the bar higher: towards consumer leadership, beyond engagement or involvement".

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Entrepreneurs have led the challenge to conventional health thinking since Craig Venter took on the NIH with the

3739: 2653: 1921:"Involving patients in health technology funding decisions: stakeholder perspectives on processes used in Australia" 355:

by nurses can help ensure a patient's individual attributes, wishes and values are represented in decision-making.

4562: 4025:"Patient accessible electronic health records: exploring recommendations for successful implementation strategies" 2640: 2156: 885: 2779: 3875:"Promoting Patient-Centered Counseling to Reduce Use of Low-Value Diagnostic Tests: A Randomized Clinical Trial" 2804: 1425: 1009: 1815: 741: 704: 594: 549:(AI), the role of entrepreneurs, the value of patient participation in precision medicine and mobile health or 396: 165: 569: in 2008. Mike Milken, another entrepreneur and stock trader, founded the Santa Monica, California-based 3717: 2922: 4580:

The European Patients' Academy (EUPATI) offers currently three pages of links to videos and articles on HTA

3613:"Identification and Reporting of Patient and Public Partner Authorship on Knowledge Syntheses: Rapid Review" 2878:

Hood L, Friend SH (March 2011). "Predictive, personalized, preventive, participatory (P4) cancer medicine".

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Webster A (2006). "Evaluation, governance and moves to a socially robust assessment of health technology".

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Vaisson G, Provencher T, Dugas M, Trottier MÈ, Chipenda Dansokho S, Colquhoun H, et al. (April 2021).

432: 124: 3568:

Rouleau G, Bélisle-Pipon JC, Birko S, Karazivan P, Fernandez N, Bilodeau K, et al. (9 October 2018).

2555: 293: 43: 1457:"Assessing Patient Organization Participation in Health Policy: A Comparative Study in France and Italy" 4242:"OpenTrials: towards a collaborative open database of all available information on all clinical trials" 263:

has been used in many different contexts. These include, for example, clinical contexts in the form of

129: 3746: 2518: 745: 218: 96: 4284: 4199:

Anderson JB, Beekman RH, Kugler JD, Rosenthal GL, Jenkins KJ, Klitzner TS, et al. (July 2015).

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Souliotis K, Agapidaki E, Peppou LE, Tzavara C, Varvaras D, Buonomo OC, et al. (January 2018).

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Increasingly, patient and public partnerships in health research focus on co-authorship of studies.

4609: 3916:"Co-creation and co-production in health service delivery: what is it and what impact can it have?" 2721: 2298: 1285:

D'Agostino TA, Atkinson TM, Latella LE, Rogers M, Morrissey D, DeRosa AP, et al. (July 2017).

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Happell B, Roper C (January 2006). "The myth of representation: The case for consumer leadership".

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The HTAi Patient and Citizens Involvement Group provides many resources for patient participation

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In the United States there are several trends emerging with potential international implications:

1601: 3873:

Fenton JJ, Kravitz RL, Jerant A, Paterniti DA, Bang H, Williams D, et al. (February 2016).

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Incorporating patients' views during evaluation of benefit-risk by the EMA Scientific Committees

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Wicks P, Richards T, Denegri S, Godlee F (July 2018). "Patients' roles and rights in research".

1666:"The new definition of health technology assessment: A milestone in international collaboration" 4614: 3669: 841: 617: 329: 4579: 4398:"Call to Action: Breaking down Barriers for Patient Participation in Oncology Clinical Trials" 1727: 807:

German, Portuguese and Slovenian Trio Presidency of the Council of the EU in September 2021".

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Wiljer D, Urowitz S, Apatu E, DeLenardo C, Eysenbach G, Harth T, et al. (October 2008).

3964:

Smith SK, Selig W, Harker M, Roberts JN, Hesterlee S, Leventhal D, et al. (2015-10-14).

3770:"Patient engagement as an emerging challenge for healthcare services: mapping the literature" 3456: 1715: 910: 861: 616:

A more ethically ambivalent development involving patient-funded research involves so-called

160: 101: 3822:

Domecq JP, Prutsky G, Elraiyah T, Wang Z, Nabhan M, Shippee N, et al. (February 2014).

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Boivin A, Richards T, Forsythe L, Grégoire A, L'Espérance A, Abelson J, et al. (2018).

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is a process where patients make decisions informed by the advice of medical professionals.

4311: 3977: 2377:"Switching Clinics: Patient Autonomy over the Course of Their Careers in Consumer Medicine" 1226: 860:

Patient-centered care especially has been subject to reinterpretation since 2001, when the

691: 566: 399:, as it pertains to the formation of health policy, is a process that involves patients as 317: 134: 86: 2128:"Good Practice Examples of Patient and Public Involvement in Health Technology Assessment" 8: 2671:"Early-career researchers' views on ethical dimensions of patient engagement in research" 2157:

Patient involvement in health technology assessment in Europe – results of the EPF survey

609:, who founded Alphanet, which has funnelled tens of millions of dollars into research on 400: 249: 119: 4315: 4201:"Improvement in Interstage Survival in a National Pediatric Cardiology Learning Network" 3981: 3323:"Mobile Tele-Mental Health: Increasing Applications and a Move to Hybrid Models of Care" 1816:"Involvement of consumers in health technology assessment activities by Inahta agencies" 4543: 4451: 4426: 4373: 4349:"Precision engagement: the PMI's success will depend on more than genomes and big data" 4348: 4268: 4241: 4092: 4075: 4051: 4024: 4000: 3965: 3946: 3850: 3823: 3796: 3769: 3639: 3612: 3545: 3520: 3501: 3439: 3414: 3349: 3322: 3298: 3273: 3242: 3217: 3053: 3026: 2973: 2946: 2903: 2860: 2765:"Implementation of the Patient-Centered Care Approach in Fertility Treatment in Israel" 2697: 2670: 2642:

A New Voice in Science: Patient participation in decision-making on biomedical research

2598: 2573: 2480: 2404: 2351: 2324: 2265: 2097: 2072: 2018: 1945: 1920: 1892: 1865: 1843: 1793: 1703: 1646: 1571: 1546: 1545:

Souliotis K, Agapidaki E, Peppou LE, Tzavara C, Samoutis G, Theodorou M (August 2016).

1481: 1456: 1406: 1311: 1286: 1262: 589: 3413:

Khodyakov D, Denger B, Grant S, Kinnett K, Armstrong C, Martin A, et al. (2019).

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Hailey D, Werkö S, Bakri R, Cameron A, Göhlen B, Myles S, et al. (January 2013).

1352: 1335: 4535: 4494: 4484: 4456: 4378: 4329: 4273: 4222: 4160: 4150: 4097: 4056: 4005: 3950: 3938: 3896: 3855: 3801: 3693: 3683: 3644: 3550: 3493: 3444: 3395: 3354: 3303: 3247: 3058: 3001: 2978: 2895: 2852: 2702: 2649: 2603: 2472: 2408: 2396: 2356: 2257: 2222: 2175: 2102: 2051: 2010: 1950: 1897: 1835: 1785: 1707: 1695: 1687: 1638: 1576: 1527: 1486: 1410: 1398: 1357: 1316: 1266: 1254: 1246: 1207: 1168: 1104: 1063: 1021: 990: 952: 942: 836: 799:' assays and cheap and efficient devices that collect health data. Newer articles in 576:

In 2010, the U.S. Government boosted patient participation by launching its own

436: 408: 197: 91: 4547: 4217: 4200: 4179: 3891: 3874: 3505: 2864: 2484: 2218: 2022: 1650: 1151:"From a Single Voice to Diversity: Reframing 'Representation' in Patient Engagement" 4527: 4509:

COVID-19 and Co-production in Health and Social Care Research, Policy, and Practice

4446: 4438: 4368: 4360: 4319: 4263: 4253: 4212: 4087: 4046: 4036: 3995: 3985: 3930: 3886: 3845: 3835: 3791: 3781: 3673: 3634: 3624: 3591: 3581: 3540: 3532: 3485: 3434: 3426: 3385: 3344: 3334: 3293: 3285: 3237: 3229: 3048: 3038: 2968: 2958: 2907: 2887: 2842: 2743: 2733: 2692: 2682: 2593: 2585: 2464: 2388: 2346: 2336: 2269: 2249: 2214: 2187: 2092: 2084: 2043: 2002: 1940: 1932: 1887: 1877: 1847: 1827: 1797: 1777: 1677: 1628: 1566: 1558: 1519: 1476: 1468: 1388: 1347: 1306: 1298: 1238: 1199: 1158: 1131: 1094: 1055: 982: 932: 756: 642:

label given to describe the social-networking emphasis of the Internet since 2004,

570: 512: 440: 391: 352: 338: 253: 155: 81: 4506:

Beresford P, Farr M, Hickey G, Kaur M, Ocloo J, Tembo D, Williams O, eds. (2021).

366:

Prior to recent advances in technology, patient participation was limited to

4574: 3990: 2847: 2830: 2502:

harvnb error: no target: CITEREFBorupFriis_BachSchmiegelowWallach-Kildemoes2015 (

2037: 1099: 1082: 973:(July 2009). "What 'patient-centered' should mean: confessions of an extremist". 708: 621: 508: 387: 4568:

Health Equality Europe's guide to HTA explains how patients can take part in HTA

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Scholz B, Kirk L, Warner T, O'Brien L, Kecskes Z, Mitchell I (16 January 2024).

1083:"Dilemmas of Representation: Patient Engagement in Health Professions Education" 4442: 3934: 3915: 3570:"Early career researchers' perspectives and roles in patient-oriented research" 3390: 3373: 2891: 970: 826: 821: 684: 278: 63: 48: 4531: 4258: 3586: 3569: 3339: 2687: 2589: 2392: 2341: 2253: 2047: 2006: 1882: 1831: 1781: 1682: 1665: 1523: 1302: 1203: 1163: 1150: 986: 687:, have the potential to provide similar benefits at a potentially lower cost. 4603: 4498: 4164: 3233: 2468: 2071:

Abelson J, Li K, Wilson G, Shields K, Schneider C, Boesveld S (August 2016).

1691: 1393: 1376: 1250: 1242: 1025: 680: 606: 404: 403:, advisors, and shared decision-makers. The practice of engaging patients in 375: 359: 273:. A nuanced definition of which was proposed in 2009 by the president of the 183: 3840: 3430: 1547:"Assessing Patient Participation in Health Policy Decision-Making in Cyprus" 4539: 4460: 4382: 4333: 4277: 4226: 4101: 4060: 4009: 3942: 3900: 3859: 3805: 3697: 3648: 3554: 3497: 3448: 3399: 3358: 3307: 3251: 3062: 2982: 2899: 2856: 2738: 2706: 2607: 2497: 2476: 2400: 2360: 2261: 2226: 2106: 2014: 1954: 1901: 1839: 1789: 1699: 1642: 1580: 1562: 1531: 1490: 1472: 1402: 1361: 1336:"Regressing or progressing: what next for the doctor-patient relationship?" 1320: 1258: 1211: 1172: 1108: 1067: 994: 956: 914: 760: 3786: 2191: 1763: 1761: 435:(HTA) uses systematic methods to evaluate the properties and effects of a 4364: 3289: 3022: 2748: 1135: 803:

outline the conditions with which patent participation can be optimized.

188: 139: 3596: 3536: 1742:"The International Network of Agencies for Health Technology Assessment" 588:

Four years after the 1000 Genomes Project hoped to call in a new era of

4516: 4115: 3710: 1758: 928: 676: 671: 643: 633: 542: 4041: 3489: 3043: 3027:"Health 2.0 and Medicine 2.0: tensions and controversies in the field" 2963: 2088: 1936: 1633: 1616: 4481:

The Patient Will See You Now: The Future of Medicine Is in Your Hands

3521:"The importance of measuring the impact of patient-oriented research" 2998:

The Patient Will See You Now: The Future of Medicine is in Your Hands

2453: 1188: 784: 780: 206: 4324: 4299: 4147:

Orphan drugs: understanding the rare disease market and its dynamics

1059: 920:

Crossing the Quality Chasm: A New Health System for the 21st Century

4076:"Patient registries: a new gold standard for "real world" research" 2944: 1284: 937: 3678: 3663: 3629: 3567: 2945:

Van De Belt TH, Engelen LJ, Berben SA, Schoonhoven L (June 2010).

795:. He cites as reasons for this development a growing interest in ' 602:

In 2011 a paper on the topic came out written by Hood and Friend.

2923:"John W. Walsh, Who Fought for Cure for Lung Disease, Dies at 68" 1975:(Report). Health Equality Europe (HEE). July 2008. Archived from 1663: 664: 550: 313: 72: 29: 22: 2947:"Definition of Health 2.0 and Medicine 2.0: a systematic review" 4346: 3662:

National Research Council (1993). Jonsen AR, Stryker J (eds.).

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Wagner JK, Peltz-Rauchman C, Rahm AK, Johnson CC (June 2017).

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International Journal of Technology Assessment in Health Care

1820:

International Journal of Technology Assessment in Health Care

1770:

International Journal of Technology Assessment in Health Care

1670:

International Journal of Technology Assessment in Health Care

796: 381: 343: 174: 3872: 3711:

Center for Drug Evaluation and Research (15 November 2022).

2724:[The patient as participant and knowledge manager]. 4188:. Rockville MD: Agency for Healthcare Research and Quality. 4022: 3412: 2571: 2204: 1148: 3713:"Externally-led Patient-Focused Drug Development Meetings" 3475: 3320: 3117:"Learn more about Electronic Health Record (EHR) adoption" 2430:"European Patients' Academy (EUPATI) – Patient education!" 2323:

Kelly MP, Heath I, Howick J, Greenhalgh T (October 2015).

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O'Rourke B, Oortwijn W, Schuller T, Group tI (June 2020).

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Australian e-Journal for the Advancement of Mental Health

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2572:

van de Bovenkamp HM, Trappenburg MJ (September 2009).

2070: 488:, based on patients' experiences of an intervention". 3913: 3824:"Patient engagement in research: a systematic review" 3767: 2822: 2325:"The importance of values in evidence-based medicine" 2299:"Values and Standards for Patient Involvement in HTA" 1597:

The trouble with patient and public involvement (PPI)

1551:

International Journal of Health Policy and Management

1461:

International Journal of Health Policy and Management

909: 2720:

Austvoll-Dahlgren A, Johansen M (12 November 2013).

2434:

European Patients' Academy on Therapeutic Innovation

1919:

Lopes E, Street J, Carter D, Merlin T (April 2016).

698: 553:, which will be dealt with in greater detail below. 520:

European Patients' Academy on Therapeutic Innovation

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Patient Involvement in Health Technology Assessment

3192:"Medical Practice Efficiencies & Cost Savings" 3020: 2805:"Patient Centered Outcomes Research Institute Fee" 679:have proven effective, especially in the field of 427: 4116:"Rare Diseases Clinical Research Network (RDCRN)" 3518: 3461:: CS1 maint: DOI inactive as of September 2024 ( 2303:Health Technology Assessment international (HTAi) 2135:Health Technology Assessment international (HTAi) 1227:"Patient advocacy in nursing: A concept analysis" 690:To meet this demand for materials, production of 4601: 4205:Circulation: Cardiovascular Quality and Outcomes 3914:Wolstenholme D, Kidd L, Swift A (October 2019). 3271: 2828: 2762: 2638: 2036:Facey K, Ploug Hansen H, Single A, eds. (2017). 1970:Understanding Health Technology Assessment (HTA) 1809: 1807: 1450: 1448: 1446: 3419:European Journal for Person Centered Healthcare 2722:"Pasienten som medvirker og kunnskapshåndterer" 2648:(dissertation). 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Clinical Oncology 2829:Desmond-Hellmann S (April 2012). 1014:Journal of Participatory Medicine 699:Patients as research stakeholders 4520:Patient Education and Counseling 4283: 2112: 1340:The Lancet. Respiratory Medicine 1291:Patient Education and Counseling 1192:Patient Education and Counseling 1031: 627: 4587: 4418: 4389: 4340: 4291: 4233: 4218:10.1161/CIRCOUTCOMES.115.001956 4192: 4171: 4149:. 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Archived from 4405:Journal of Precision Medicine 3774:Nursing Research and Practice 2207:Social Science & Medicine 1353:10.1016/S2213-2600(18)30075-4 1010:"Why Participatory Medicine?" 871: 837:Peer support § In health 454: 3991:10.1371/journal.pone.0140232 3828:BMC Health Services Research 2848:10.1126/scitranslmed.3003473 2639:Caron-Flinterman JF (2005). 1100:10.1097/ACM.0000000000001971 783:campaign in 2016 as part of 433:Health technology assessment 7: 4396:Carte JL, Cubino J (2016). 3218:"Care for chronic diseases" 3167:"Improve Care Coordination" 3025:, Wareham J (August 2008). 2921:Roberts S (17 March 2017). 1155:Qualitative Health Research 1008:Dyson E (21 October 2009). 810: 525:In Austria, a bibliography 294:lived experience leadership 44:Doctor-patient relationship 10: 4631: 4443:10.1038/s43856-022-00156-x 3935:10.1136/ebnurs-2019-103184 3391:10.1016/j.jacr.2016.09.013 2892:10.1038/nrclinonc.2010.227 2778:Marcus AD (16 June 2011). 763:medicines. In the US, the 702: 662: 631: 506: 385: 327: 307: 259:In recent years, the term 130:Disability rights movement 4532:10.1016/j.pec.2018.08.029 4483:. New York: Basic Books. 4259:10.1186/s13063-016-1290-8 3747:European Medicines Agency 3587:10.1186/s40900-018-0117-z 3340:10.3390/healthcare2020220 3000:. 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York: 8. 1751:2021-10-27 1600:(Speech). 971:Berwick DM 927:. p. 872:References 703:See also: 663:See also: 644:Health 2.0 634:Health 2.0 632:See also: 543:Health 2.0 527:inter alia 507:See also: 482:evidential 455:Approaches 386:See also: 328:See also: 148:Approaches 4499:904608088 4165:867555228 3951:201669626 3724:1 October 3484:: k3193. 3201:1 October 3176:1 October 3151:1 October 2681:(1): 21. 2532:1 October 2439:1 October 2409:257217960 2335:(1): 69. 2308:1 October 2141:1 October 1708:218617518 1692:0266-4623 1627:: k5147. 1411:232101994 1267:160012852 1251:0969-7330 1026:2152-7202 1020:(1): e1. 785:open data 781:AllTrials 613:or COPD. 207:Sick role 87:Adherence 4571:Archived 4548:52180607 4540:30201221 4461:35903184 4383:27787499 4334:25925459 4278:27056367 4227:26058717 4102:22826660 4061:18974036 4010:26465328 3970:PLOS ONE 3943:31462428 3901:26640973 3860:24568690 3806:23213497 3698:25121219 3649:34110293 3555:31387956 3506:51720756 3498:30045909 3449:34277012 3400:27888948 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