Patient participation is a trend that arose in answer to medical paternalism. However, only rarely can unchecked physician paternalism be justified, and unlimited patient autonomy would presumably be equally abhorrent. 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: shared decision making, participatory medicine, health consumerism, and patient-centered care.[a] 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). In 2019 a collection of papers on this research topic was published with newer information.
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."
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.
Formation of health policy as stakeholders
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 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 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 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
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.
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 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.
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 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).
Limitations and criticism
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 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" (page 1518).
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 "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.
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 experimental derived from clinical trials, evidential, derived from existing clinical practice, and experiential, based on patients' experiences of an intervention".
A further issue for patient participation in HTA is that of the individual versus the group. The HTAi's list available for endorsement on values for patient involvement express this issue as 'involvement ... contributes to equity by seeking to understand the 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'.
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, [Evidence-Based Medicine] EBM and HTA have been framed within the 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 ."
Transatlantic rise of health advocacy
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 European Patients' Academy on Therapeutic Innovation (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.
In Austria, a bibliography inter alia 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.
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 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.
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 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".
In the United States there are several trends emerging with potential international implications: Health 2.0, artificial intelligence in healthcare (AI), the role of entrepreneurs, the value of patient participation in precision medicine and mobile health or MHealth, which will be dealt with in greater detail below.
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 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.
Prior to the recent advances in technology, patient participation was limited to shared decision making (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.
Changes in modern technology now allow computers to play an increasingly important role in healthcare decision making. Examples of artificial intelligence (AI) technology that is being 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 the Watson's objectives is to highlighting 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.
Role of entrepreneurship
Entrepreneurs have led the challenge to conventional health thinking since Craig Venter took on the NIH with the 1000 Genomes Project in 2008. Mike Milken, another entrepreneur and stock trader, founded the Santa Monica, California based Milken Institute. 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.
In 2010, the U.S. Government boosted patient participation by launching its own Patient-Centered Outcomes Research Institute. 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.
Four years after the spectacular 1000 Genomes Project hoped to call in a new era of precision medicine (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 Science Translational Medicine 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 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."
In Health 2.0
Taking its name from the "Web 2.0" label given to describe the social-networking emphasis of the Internet since 2004, Health 2.0 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 "Medicine 2.0," 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 electronic health records, 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.
Mobile health (MHealth)
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. Mobile applications 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 videoconferencing appointments have proven effective, especially in the field of mental health, 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 patient portals, have the potential to provide similar benefits at a potentially lower cost.
To meet this demand for materials, production of patient-centered health applications is occurring at a rapid pace, with estimates of over 100,000 mobile applications available for use already. 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 in patient's 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.
Patients as research stakeholders
Patient participation can include a broad spectrum of activities for human subjects during clinical trials and has become associated with several other words such as "patient engagement" or "decision making". 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.
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.'" 
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.
Increasingly, patient and public partnerships in health research focus on co-authorship of studies.
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, the AIDS activists argued not only for new clinical 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 Prescription Drug User Fee Act (PDUFA) V 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 European Medicine Agency (EMA) has been attempting to incorporate patient perspectives during the evaluation of medicinal products by the EMA scientific committees.
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 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.
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 disease registry. 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 rare-disease medicines. In the US, the Rare Diseases Clinical Research Network (RDCRN) was created in 2003 which includes a registry 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. "Patient registry" is a developing term, and this 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 Collaborative have generated significant improvements in clinical outcomes through a commitment to co-creation of research.
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 AllTrials campaign in 2016 as part of open data in medicine.
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 Nature. He cites as reasons for this development a growing interest in 'omics' assays and cheap and efficient devices that collect health data. Newer articles in Nature outline the conditions with which patent participation can be optimized.
With cancer being a prime target for precision medicine, patients are increasingly being recruited to participate in clinical trials to help find cures.
- Interactive patient care
- Patient portal
- Patient-Centered Outcomes Research Institute
- Peer support § In health
- Personal health record
- Patient-centered care especially has been subject to reinterpretation since 2001, when the Institute of Medicine (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."
- Cohn F (February 2004). "Addressing paternalism with patients' rights: unintended consequences". The Virtual Mentor. 6 (2). doi:10.1001/virtualmentor.2004.6.2.pfor1-0402. PMID 23260361.
- Dyson E (21 October 2009). "Why Participatory Medicine?". Journal of Participatory Medicine. 1 (1): e1. ISSN 2152-7202.
- Robinson JC (December 2005). "Managed consumerism in health care". Health Affairs. 24 (6): 1478–89. doi:10.1377/hlthaff.24.6.1478. PMID 16284020.
- "Declaration on: Patient-Centered Healthcare" (PDF). International Alliance of Patients' Organizations. 2016. Retrieved 30 June 2016.
- Institute of Medicine (2001). "Executive Summary". Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academies Press. p. 6. doi:10.17226/10027. ISBN 978-0-309-07280-9. PMID 25057539.
- Berwick DM (July 2009). "What 'patient-centered' should mean: confessions of an extremist". Health Affairs. 28 (4): w555-65. doi:10.1377/hlthaff.28.4.w555. PMID 19454528.
- "Is 2017 the year for PPIE?". National Institute for Health Research. National Health Service. 23 February 2017. Retrieved 19 June 2017.
- Green G, Boaz A, Stuttaford M (2019). "Editorial: Public Participation in Health Care: Exploring the Co-production of Knowledge". Frontiers in Sociology. 4 (4:73): 73. doi:10.3389/fsoc.2019.00073. PMC 8022568. PMID 33869395.
- Rowland P, Kumagai AK (June 2018). "Dilemmas of Representation: Patient Engagement in Health Professions Education". Academic Medicine. 93 (6): 869–873. doi:10.1097/ACM.0000000000001971. PMID 29068822.
- Kelty C, Panofsky A, Currie M, Crooks R, Erickson S, Garcia P, Wartenbe M, Wood S (2015). "Seven dimensions of contemporary participation disentangled". Journal of the Association for Information Science and Technology. 66 (3): 474–488. doi:10.1002/asi.23202. S2CID 44604771. Retrieved May 12, 2017.
- Souliotis K, Agapidaki E, Peppou LE, Tzavara C, Varvaras D, Buonomo OC, et al. (January 2018). "Assessing Patient Organization Participation in Health Policy: A Comparative Study in France and Italy". International Journal of Health Policy and Management. 7 (1): 48–58. doi:10.15171/ijhpm.2017.44. PMC 5745867. PMID 29325402.
- Carman KL, Dardess P, Maurer M, Sofaer S, Adams K, Bechtel C, Sweeney J (February 2013). "Patient and family engagement: a framework for understanding the elements and developing interventions and policies". Health Affairs. 32 (2): 223–31. doi:10.1377/hlthaff.2012.1133. PMID 23381514.
- Souliotis K, Agapidaki E, Peppou LE, Tzavara C, Samoutis G, Theodorou M (August 2016). "Assessing Patient Participation in Health Policy Decision-Making in Cyprus". International Journal of Health Policy and Management. 5 (8): 461–466. doi:10.15171/ijhpm.2016.78. PMC 4968249. PMID 27694659.
- Keynote at the Cochrane (organisation) 2018, Edinburgh, Scotland: Johanssen J (2018). "The trouble with patient and public involvement (PPI)".
- Boivin A, Richards T, Forsythe L, Grégoire A, L'Espérance A, Abelson J, et al. (2018). "Evaluating patient and public involvement in research". British Medical Journal. 363: k5147. doi:10.1136/bmj.k5147. PMID 30522999. S2CID 54622123.
- Facey K, Boivin A, Gracia J, Hansen HP, Lo Scalzo A, Mossman J, Single A (July 2010). "Patients' perspectives in health technology assessment: a route to robust evidence and fair deliberation". International Journal of Technology Assessment in Health Care. 26 (3): 334–40. doi:10.1017/S0266462310000395. PMID 20584364. S2CID 5522111.
- Hailey D, Werkö S, Bakri R, Cameron A, Göhlen B, Myles S, et al. (January 2013). "Involvement of consumers in health technology assessment activities by Inahta agencies". International Journal of Technology Assessment in Health Care. 29 (1): 79–83. doi:10.1017/S026646231200075X. PMID 23217279. S2CID 8175347.
- Berglas S, Jutai L, MacKean G, Weeks L (2016). "Patients' perspectives can be integrated in health technology assessments: an exploratory analysis of CADTH Common Drug Review". Research Involvement and Engagement. 2: 21. doi:10.1186/s40900-016-0036-9. PMC 5611639. PMID 29062521. (Open Access)
- Lopes E, Street J, Carter D, Merlin T (April 2016). "Involving patients in health technology funding decisions: stakeholder perspectives on processes used in Australia". Health Expectations. 19 (2): 331–44. doi:10.1111/hex.12356. PMC 5055264. PMID 25703958. (Open Access)
- Health Equality Europe (HEE). "Understanding Health Technology Assessment (HTA)" (PDF). Cite journal requires
- 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?". The Patient. 8 (1): 29–39. doi:10.1007/s40271-014-0106-8. PMID 25516506. S2CID 35735289.
- Facey, Karen; Ploug Hansen, Helle; Single, Ann, eds. (2017). Patient Involvement in Health Technology Assessment. Springer. doi:10.1007/978-981-10-4068-9. ISBN 9789811040672.
- Abelson J, Li K, Wilson G, Shields K, Schneider C, Boesveld S (August 2016). "Supporting quality public and patient engagement in health system organizations: development and usability testing of the Public and Patient Engagement Evaluation Tool". Health Expectations. 19 (4): 817–27. doi:10.1111/hex.12378. PMC 5152717. PMID 26113295.
- Health Technology Assessment international (HTAi) (2015). "Good Practice Examples of Patient and Public Involvement in Health Technology Assessment (a living document)" (PDF). Cite journal requires
- "Patient involvement in health technology assessment in Europe – results of the EPF survey" (PDF). European Patients Forum. 2013. (Open Access)
- Facey K (2011). "Patient involvement in HTA: What added value?". Pharmaceuticals, Policy and Law. 13 (3, 4): 245–251. doi:10.3233/PPL-2011-0329. (Open Access)
- 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". Social Science & Medicine. 70 (10): 1518–26. doi:10.1016/j.socscimed.2010.01.036. PMID 20207061.
- Facey K, Boivin A, Gracia J, Hansen HP, Lo Scalzo A, Mossman J, Single A (July 2010). "Patients' perspectives in health technology assessment: a route to robust evidence and fair deliberation". International Journal of Technology Assessment in Health Care. 26 (3): 334–40. doi:10.1017/s0266462310000395. PMID 20584364. S2CID 5522111.
- Webster, Andrew: Evaluation, governance and moves to a socially robust assessment of health technology, Working Paper 34, York, 2006, page 8,
- "Values and Standards for Patient Involvement in HTA". Cite journal requires
- Kelly MP, Heath I, Howick J, Greenhalgh T (October 2015). "The importance of values in evidence-based medicine". BMC Medical Ethics. 16 (1): 69. doi:10.1186/s12910-015-0063-3. PMC 4603687. PMID 26459219. (Open Access)
- "European Patients' Academy (EUPATI) – Patient education!". EUPATI.
- 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". Therapeutic Innovation & Regulatory Science. 50 (3): 304–311. doi:10.1177/2168479015622668. PMID 30227074. S2CID 52296106.
- Borup et al. 2015, p. 5 & note 29 harvnb error: no target: CITEREFBorupFriis_BachSchmiegelowWallach-Kildemoes2015 (help).
- European Medicines Agency, Stakeholders and Communication Division (2015). Draft Work plan for the European Medicines Agency Human Scientific Committees' Working Party with Patients' and Consumers' Organisations (PCWP) 2016 (PDF) (Report).
- "Session 553: Overview". Salzburg Global Seminar.
- van de Bovenkamp HM, Trappenburg MJ (September 2009). "Reconsidering patient participation in guideline development". Health Care Analysis. 17 (3): 198–216. doi:10.1007/s10728-008-0099-3. PMC 2725277. PMID 19101804.
- Adonis T (2016). "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" (PDF).
- Caron-Flinterman JF (2005). A New Voice in Science: Patient participation in decision-making on biomedical research (PDF) (dissertation). Amsterdam: Vrije Universiteit.
- Bélisle-Pipon JC, Rouleau G, Birko S (March 2018). "Early-career researchers' views on ethical dimensions of patient engagement in research". BMC Medical Ethics. 19 (1): 21. doi:10.1186/s12910-018-0260-y. PMC 5842523. PMID 29514618.
- Austvoll-Dahlgren A, Johansen M (2012). "Pasienten som medvirker og kunnskapshåndterer" [The patient as participant and knowledge manager]. Norsk Epidemiologi. 23 (2): 225–230. doi:10.5324/nje.v23i2.1649.
- Artom TM, Hass B, Zhivaev L (2019). "Implementation of the Patient-Centered Care Approach in Fertility Treatment in Israel". Jerusalem: Myers-JDC-Brookdale Institute.
- Harrison N (March 2018). "Regressing or progressing: what next for the doctor-patient relationship?". The Lancet. Respiratory Medicine. 6 (3): 178–180. doi:10.1016/S2213-2600(18)30075-4. PMID 29508703.
- Vaisson G, Provencher T, Dugas M, Trottier MÈ, Chipenda Dansokho S, Colquhoun H, et al. (April 2021). "User Involvement in the Design and Development of Patient Decision Aids and Other Personal Health Tools: A Systematic Review". Medical Decision Making. 41 (3): 261–274. doi:10.1177/0272989X20984134. PMID 33655791. S2CID 232101994.
- "IBM and MIT partner on $240M AI lab". Healthcare Dive. Retrieved 2017-09-30.
- Marcus AD (2011-06-16). "Lessons From AIDS/HIV Advocacy Efforts". WSJ. Retrieved 2017-09-30.
- "Patient Centered Outcomes Research Institute Fee | Internal Revenue Service". www.irs.gov. Retrieved 2017-09-30.
- Desmond-Hellmann S (April 2012). "Toward precision medicine: a new social contract?". Editorial. Science Translational Medicine. 4 (129): 129ed3. doi:10.1126/scitranslmed.3003473. PMID 22496543. S2CID 41137820.
- Hood L, Friend SH (March 2011). "Predictive, personalized, preventive, participatory (P4) cancer medicine". Nature Reviews. Clinical Oncology. 8 (3): 184–7. doi:10.1038/nrclinonc.2010.227. PMID 21364692. S2CID 9074524.
- Roberts S (17 March 2017). "John W. Walsh, Who Fought for Cure for Lung Disease, Dies at 68". New York Times.
- Van De Belt TH, Engelen LJ, Berben SA, Schoonhoven L (June 2010). "Definition of Health 2.0 and Medicine 2.0: a systematic review". Journal of Medical Internet Research. 12 (2): e18. doi:10.2196/jmir.1350. PMC 2956229. PMID 20542857.
- Topol E (2015). The Patient Will See You Now: The Future of Medicine is in Your Hands. Basic Books. ISBN 978-0465054749.
- Hughes B, Joshi I, Wareham J (August 2008). "Health 2.0 and Medicine 2.0: tensions and controversies in the field". Journal of Medical Internet Research. 10 (3): e23. doi:10.2196/jmir.1056. PMC 2553249. PMID 18682374.
- "Hello Health – EHR – Telemedicine". Hello Health. 16 February 2017.
- "Home - Health 2.0". Health 2.0.
- "Learn more about Electronic Health Record (EHR) adoption | Providers & Professionals | HealthIT.gov". www.healthit.gov.
- "Improving Patient Outcomes and Diagnostics with EHRs | Providers & Professionals | HealthIT.gov". www.healthit.gov.
- "Improve Care Coordination using Electronic Health Records | Providers & Professionals | HealthIT.gov". www.healthit.gov.
- "Improve Medical Practice Management with Electronic Health Records | Providers & Professionals | HealthIT.gov". www.healthit.gov.
- Wagner EH, Groves T (October 2002). "Care for chronic diseases". BMJ. 325 (7370): 913–4. doi:10.1136/bmj.325.7370.913. PMC 1124427. PMID 12399321.
- Baysari MT, Westbrook JI (August 2015). "Mobile Applications for Patient-centered Care Coordination: A Review of Human Factors Methods Applied to their Design, Development, and Evaluation". Yearbook of Medical Informatics. 10 (1): 47–54. doi:10.15265/IY-2015-011. PMC 4587034. PMID 26293851.
- Chan SR, Torous J, Hinton L, Yellowlees P (May 2014). "Mobile Tele-Mental Health: Increasing Applications and a Move to Hybrid Models of Care". Healthcare. 2 (2): 220–33. doi:10.3390/healthcare2020220. PMC 4934468. PMID 27429272.
- Lewis K, Reicher MA (December 2016). "Web Applications for Patient Communication". Journal of the American College of Radiology. 13 (12 Pt B): 1603–1607. doi:10.1016/j.jacr.2016.09.013. PMID 27888948.
- Khodyakov D, Denger B, Grant S, Kinnett K, Armstrong C, Martin A, Peay H, Coulter I, Hazlewood G (2019). "The RAND/PPMD Patient-Centeredness Method: a novel online approach to engaging patients and their representatives in guideline development". European Journal for Person Centered Healthcare. 7 (3): 6. doi:10.5750/ejpch.v7i3.1750 (inactive 31 October 2021).CS1 maint: DOI inactive as of October 2021 (link)
- Wicks P, Richards T, Denegri S, Godlee F (July 2018). "Patients' roles and rights in research". BMJ. 362: k3193. doi:10.1136/bmj.k3193. PMID 30045909. S2CID 51720756.
- Aubin D, Hebert M, Eurich D (August 2019). "The importance of measuring the impact of patient-oriented research". CMAJ. 191 (31): E860–E864. doi:10.1503/cmaj.190237. PMC 6682486. PMID 31387956.
- Rouleau G, Bélisle-Pipon JC, Birko S, Karazivan P, Fernandez N, Bilodeau K, et al. (2018-10-09). "Early career researchers' perspectives and roles in patient-oriented research". Research Involvement and Engagement. 4 (1). doi:10.1186/s40900-018-0117-z.
- Ellis U, Kitchin V, Vis-Dunbar M (June 2021). "Identification and Reporting of Patient and Public Partner Authorship on Knowledge Syntheses: Rapid Review". Journal of Participatory Medicine. 13 (2): e27141. doi:10.2196/27141. PMC 8235296. PMID 34110293.
- Council, National Research (1969-12-31). The Social Impact of AIDS in the United States. doi:10.17226/1881. ISBN 9780309046282. PMID 25121219.
- Research, Center for Drug Evaluation and. "Prescription Drug User Fee Act (PDUFA) - Externally-led Patient-Focused Drug Development Meetings". www.fda.gov. Retrieved 2017-09-17.
- "European Medicines Agency" (PDF). www.ema.europa.eu. 23 October 2014. Retrieved September 16, 2017.
- Barello S, Graffigna G, Vegni E (2012). "Patient engagement as an emerging challenge for healthcare services: mapping the literature". Nursing Research and Practice. 2012: 905934. doi:10.1155/2012/905934. PMC 3504449. PMID 23213497.
- Domecq JP, Prutsky G, Elraiyah T, Wang Z, Nabhan M, Shippee N, et al. (February 2014). "Patient engagement in research: a systematic review". BMC Health Services Research. 14: 89. doi:10.1186/1472-6963-14-89. PMC 3938901. PMID 24568690.
- Fenton JJ, Kravitz RL, Jerant A, Paterniti DA, Bang H, Williams D, et al. (February 2016). "Promoting Patient-Centered Counseling to Reduce Use of Low-Value Diagnostic Tests: A Randomized Clinical Trial". JAMA Internal Medicine. 176 (2): 191–7. doi:10.1001/jamainternmed.2015.6840. PMID 26640973.
- Wolstenholme D, Kidd L, Swift A (October 2019). "Co-creation and co-production in health service delivery: what is it and what impact can it have?" (PDF). Evidence-Based Nursing. 22 (4): 97–100. doi:10.1136/ebnurs-2019-103184. PMID 31462428. S2CID 201669626.
- Smith SK, Selig W, Harker M, Roberts JN, Hesterlee S, Leventhal D, et al. (2015-10-14). "Patient Engagement Practices in Clinical Research among Patient Groups, Industry, and Academia in the United States: A Survey". PLOS ONE. 10 (10): e0140232. Bibcode:2015PLoSO..1040232S. doi:10.1371/journal.pone.0140232. PMC 4605726. PMID 26465328.
- Wiljer D, Urowitz S, Apatu E, DeLenardo C, Eysenbach G, Harth T, et al. (October 2008). "Patient accessible electronic health records: exploring recommendations for successful implementation strategies". Journal of Medical Internet Research. 10 (4): e34. doi:10.2196/jmir.1061. PMC 2629367. PMID 18974036.
- Trotter JP (2002). "Patient registries: a new gold standard for "real world" research". The Ochsner Journal. 4 (4): 211–4. PMC 3400525. PMID 22826660.
- "Rare Diseases Clinical Research Network (RDCRN)". www.rarediseasesnetwork.org. Retrieved 2017-09-17.
- Hernberg-Ståhl E (2013). Orphan drugs : understanding the rare disease market and its dynamics. Reljanović, Miroslav. Oxford: WP, Woodhead Publishing. ISBN 9781908818393. OCLC 867555228.
- Workman TA (2013). "Defining Patient Registries and Research Networks". Engaging Patients in Information Sharing and Data Collection: The Role of Patient-Powered Registries and Research Networks. Rockville MD: Agency for Healthcare Research and Quality.
- Anderson JB, Beekman RH, Kugler JD, Rosenthal GL, Jenkins KJ, Klitzner TS, et al. (July 2015). "Improvement in Interstage Survival in a National Pediatric Cardiology Learning Network". Circulation: Cardiovascular Quality and Outcomes. 8 (4): 428–36. doi:10.1161/CIRCOUTCOMES.115.001956. PMID 26058717.
- Goldacre B, Gray J (April 2016). "OpenTrials: towards a collaborative open database of all available information on all clinical trials". Trials. 17: 164. doi:10.1186/s13063-016-1290-8. PMC 4825083. PMID 27056367.
- Schork NJ (April 2015). "Personalized medicine: Time for one-person trials". Nature. 520 (7549): 609–11. Bibcode:2015Natur.520..609S. doi:10.1038/520609a. PMID 25925459.
- Wagner JK, Peltz-Rauchman C, Rahm AK, Johnson CC (June 2017). "Precision engagement: the PMI's success will depend on more than genomes and big data". Genetics in Medicine. 19 (6): 620–624. doi:10.1038/gim.2016.165. PMC 5555824. PMID 27787499.
- Carte JL, Cubino J (2016). "Call to Action: Breaking down Barriers for Patient Participation in Oncology Clinical Trials" (PDF). Journal of Precision Medicine. Kneed Media.
- Topol EJ (2015). The Patient Will See You Now: The Future of Medicine Is in Your Hands. New York: Basic Books. ISBN 978-0-465-05474-9. OCLC 904608088.
- Beresford P, Farr M, Hickey G, Kaur M, Ocloo J, Tembo D, Williams O, eds. (2021). COVID-19 and Co-production in Health and Social Care Research, Policy, and Practice. Policy Press.
- Håkansson Eklund J, Holmström IK, Kumlin T, Kaminsky E, Skoglund K, Höglander J, Sundler AJ, Condén E, Summer Meranius M (January 2019). ""Same same or different?" A review of reviews of person-centered and patient-centered care". Patient Education and Counseling. 102 (1): 3–11. doi:10.1016/j.pec.2018.08.029. PMID 30201221. S2CID 52180607.
- The HTAi Patient and Citizens Involvement Group provides many resources for patient participation
- Health Equality Europe’s guide to HTA explains how patients can take part in HTA
- The European Patients' Academy (EUPATI) offers currently three pages of links to videos and articles on HTA (details on EUPATI's funding)
- 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’ groups.