Patient participation

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Patient participation is a trend that arose in answer to perceived physician paternalism. However, only rarely can unchecked physician paternalism be justified, and unlimited patient autonomy would presumably be equally abhorrent.[1]

In recent years the term patient participation has been used in many different contexts. Participatory medicine,[2] health consumerism[3] and patient-centered care.[4][5][6] 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"[7] 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)[8] in the sense of the older term coproduction (public services).

Patient participation can be subdivided into the following areas where there seems to be a role for patients and / or their advocates (The term is too generic for this list to be exhaustive. See Kelty et al. for general background[9]):

Shared decision making in medicine (SDM)[edit]

This is traditionally understood as a dialogue between patients and physicians in clinical practice. For details, see separate article entitled shared decision-making in medicine (SDM). In addition, a newer development likely to affect SDM is listed below as Artificial Intelligence (AI) in healthcare.

Formation of health policy as stakeholders[edit]

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

Conduct of research as stakeholders[edit]

This includes agenda-setting, clinical guideline development and clinical trial design (see also Health advocacy).

Transatlantic examples of the rise of health advocacy[edit]

Workshops in Denmark and Austria have resulted in calls to action to reinforce patients' role in the latter three categories. The Danish workshop recommended the new Toolbox of resources for patient participation from the European Patients' Academy on Therapeutic Innovation (EUPATI).[10][11] Furthermore the Danish workshop reported that the European Medicines Agency would be "measuring the impact of patient involvement", this being crucial to establishing credibility.[12] And indeed, measurement is provided for in the place cited.[13]

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 Mar, 2017.[14]

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.[15] Adonis is more positive in her shorter paper.[16] Caron-Flinterman goes into more detail in her dissertation.[17]

In Norway Nilsen et al. were critical of patients' role in health policy and clinical guideline development in their Cochrane Intervention Review.[18] 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".[19]

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.

Health 2.0[edit]

Health 2.0 is a trend resulting from the spread of Internet usage.[20]

Artificial intelligence (AI) in healthcare[edit]

Prior to advances in technology, shared decision making (SDM) was seen as something that occurred specifically between a patient and their physician. Changes to modern technology now allows computers to also play an increasingly important role in healthcare decision making by streamlining medical decision making using a variety of new tools. Examples of artificial intelligence technology that is being used in healthcare includes IBM's Watson Health, which is intended to assist in the diagnosis and treatment of difficult illnesses or disease.[21] 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.[21] Physicians can use ailment specific programs such as the Watson for Oncology app, which is aimed at the detection and treatment of tumors.[22]

The role of entrepreneurs in bringing about change[edit]

Entrepreneurs have had an impact on patient participation via projects, institutions, and programs that challenged conventional health thinking.[citation needed] In 2008 stock trader Mike Milken founded The Milken Institute, which is based in Santa Monica, California.[citation needed] 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."[23][22] The Fastercures program proposes patient-center improvements and advancements in the modern healthcare arena.[citation needed]

In 2010, the U.S. Government launched its own Patient-Centered Outcomes Research Institute. PCORI is striving to systematize its evaluation metrics to prove where results show improvement. [23] PCORI was created by provisions in the Patient Protection and Affordable Care Act of 2010. The 501(c) organization has faced much scrutiny over funding, when it was revealed PCORI was funded by a new tax.

Value in precision medicine[edit]

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."[24]

In 2011 a seminal paper on the topic came out written by Hood and Friend. [25]

A second success story is that of the patient John W. Walsh, who founded Alphanet, which has funnelled tens of millions of dollars into research on chronic obstructive pulmonary disease or COPD.[26]

A more ethically ambivalent development involving patient-funded research involves so-called named patient programs and expanded access.

Patients in clinical trials as subjects[edit]

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.[27]

A newer article in Nature outlines the conditions with which patent participation can be optimized, and it is co-authored by Jennifer Wagner et al.[28]

With cancer being a prime target for PM, Dr. Jennifer Carter, founder of the start-up N-of-One, recruits patients to "participate" in clinical trials to help find a cure for it.[29]

Patients have a new resource to help them navigate the clinical trials landscape and find lay summaries of medical research in the OpenTrials database launched by the AllTrials campaign in 2016 as part of open data in medicine.[30]

Mobile health[edit]

Especially in the developing world, MHealth is bringing promising solutions.


  1. ^ Cohn, Felicia (February 2004). "Addressing Paternalism with Patients' Rights: Unintended Consequences.". Virtual Mentor. 
  2. ^ Dyson, Esther (21 October 2009). "Why Participatory Medicine?". Journal of Participatory Medicine. 1 (1): e1. ISSN 2152-7202.  open access publication – free to read
  3. ^ Robinson, James C. (December 2005). "Managed Consumerism In Health Care". Health Affairs. 24 (6): 1478–89. ISSN 0278-2715. PMID 16284020. doi:10.1377/hlthaff.24.6.1478Freely accessible. 
  4. ^ International Alliance of Patients' Organizations (2016). "Declaration on: Patient-Centered Healthcare" (PDF). Retrieved 30 June 2016. 
  5. ^ 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."
  6. ^ 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. ISBN 978-0-309-07280-9. doi:10.17226/10027Freely accessible – via National Academies Press. 
  7. ^ Berwick, Donald M. (July 2009). "What Patient-Centered Should Mean: Confessions of an Extremist". Health Affairs. 28 (4): w555–65. PMID 19454528. doi:10.1377/hlthaff.28.4.w555Freely accessible. Retrieved 19 July 2016. 
  8. ^ National Institute for Health Research (2016). "Is 2017 the year for PPIE? 23 February 2017". Retrieved 19 June 2017. 
  9. ^ 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: 474–488. doi:10.1002/asi.23202. Retrieved May 12, 2017. 
  10. ^ "European Patients’ Academy (EUPATI) – Patient education!". EUPATI. 
  11. ^ Borup, Gitte; Friis Bach, Karin; Schmiegelow, Merete; Wallach-Kildemoes, Helle; Jannik Bjerrum, Ole; Westergaard, Niels (2015). "A Paradigm Shift Towards Patient Involvement in Medicines Development and Regulatory Science: Workshop Proceedings and Commentary (open access copy)". Therapeutic Innovation & Regulatory Science. 1–8. doi:10.1177/2168479015622668. (Subscription required (help)). 
  12. ^ Borup et al. (2015), page 5 and Footnote 29.
  13. ^ European Medicines Agency, Stakeholders and Communication Division, ed. (2015). "Draft Work plan for the European Medicines Agency Human Scientific Committees’ Working Party with Patients' and Consumers' Organisations (PCWP) 2016," (PDF). 
  14. ^ "Overview". 
  15. ^ Bovenkamp, H.M.; Trappenburg, M. J. (2009). "Reconsidering Patient Participation in Guideline Development". Health Care Anal. 17: 198. doi:10.1007/s10728-008-0099-3. 
  16. ^ Adonis, Tamara (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). 
  17. ^ Caron-Flinterman, Johanna Francisca (2005). "A New Voice in Science: Patient participation in decision-making on biomedical research, dissertation, Vrije Universiteit, Amsterdam," (PDF). 
  18. ^ Nilsen, Elin Strømme (deceased); Tinderholdt Myrhaug, Hilde; Oliver, Sandy; Oxman, Andrew D (2006). "Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material.". Cochrane Database of Systematic Reviews 2006, Art. No.: CD004563 (3). doi:10.1007/s10728-008-0099-3. 
  19. ^ Austvoll-Dahlgren, A; Johansen, M (2012). "The patient as participant and knowledge manager, Vitenskapelig artikkel – Pasienten som medvirker og kunnskapshåndterer". Norsk Epidemiologi. 23 (2): 225–230. 
  20. ^ Eric Topol (2015). the Patient Will See You Now. Basic Books. 
  21. ^ a b "Here's How IBM Watson Health is Transforming the Health Care Industry". Fortune. 
  22. ^ Furlow, B (2016). "IBM Watson collaboration aims to improve oncology decision support tools. Report from Miami Breast Cancer Conference, held March 10–13.". 
  23. ^ "Programs". FasterCures. Retrieved 2017-09-18. 
  24. ^ Desmond-Hellmann, Susan (2012). "Toward precision medicine: A new social contract?". Sci.Transl. Med. 4 (129ed3). 
  25. ^ Hood, L; Friend, Stephen (2011). "Predictive, personalized, preventive, participatory (P4) cancer medicine" (PDF). Nat.Rev.Clin.Oncol. 8: 184–187. 
  26. ^ Roberts, S (2017). "John W. Walsh, Who Fought for Cure for Lung Disease, Dies at 68, March 17". NY Times. 
  27. ^ Schork, N J (2015). "Personalized medicine: Time for one-person trials". Nature. 520 (7549): 609–611. 
  28. ^ Wagner, Jennifer K; Peltz-Rauchman, Cathryn; Rahm, Alanna K.; Johnson, Christine C. (2017). "Precision engagement: the PMI's success will depend on more than genomes and big data (open access)". Nature. 19 (6): 620–624. doi:10.1038/gim.2016.165. 
  29. ^ Carter, Jennifer Levin; Cubino, Jennifer (2016). "Call to Action: Breaking down Barriers for Patient Participation in Oncology Clinical Trials" (PDF). 
  30. ^ Goldacre, Ben; Gray, Jonathan (2016). "OpenTrials: towards a collaborative open database of all available information on all clinical trials". doi:10.1186/s13063-016-1290-8.