| Revision as of 19:07, 23 May 2016 editBluerasberry (talk | contribs)Autopatrolled, Event coordinators, Extended confirmed users, File movers, New page reviewers, Pending changes reviewers, Rollbackers56,645 edits Added {{merge to}} tag to article (TW)← Previous edit | Latest revision as of 15:52, 30 June 2016 edit undoBluerasberry (talk | contribs)Autopatrolled, Event coordinators, Extended confirmed users, File movers, New page reviewers, Pending changes reviewers, Rollbackers56,645 edits make redirect per Talk:Patient_participation... | ||
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| {{merge to|Patient participation|discuss=Talk:Patient participation#Proposed merge with Participatory medicine|date=May 2016}} | |||
| The Society for Participatory Medicine defines '''participatory medicine''' as “…a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.”<ref>{{cite web|title=Society for Participatory Medicine|url=http://participatorymedicine.org/|accessdate=4 December 2014}} {{Open access}}</ref> | |||
| ==History== | |||
| Participatory medicine is a model of medical care in which the '''active''' role of the patient is emphasized. Participatory Medicine has been used at least as early as 2000 to mean one or more of four interrelated ideas: | |||
| * A group of people who suffer from a chronic disease form a community (often an online community, a ]) to share information and mutually support each other. | |||
| * Members of a patient community (or members of a community disproportionately affected by a disease) play important roles in community health decision-making.<ref>{{cite journal|last1=Vargas|first1=RB|last2=Jones|first2=L|last3=Terry|first3=C|last4=Nicholas|first4=SB|last5=Kopple|first5=J|last6=Forge|first6=N|last7=Griffin|first7=A|last8=Louis|first8=M|last9=Barba|first9=L|last10=Small|first10=L|last11=Norris|first11=KC|author12=Building Bridges to Optimum Health World Kidney Day Los Angeles 2007 Collaborative|title=Community-partnered approaches to enhance chronic kidney disease awareness, prevention, and early intervention|journal=Adv Chronic Kidney Dis|date=April 2008|volume=15|issue=2|pages=153-161|doi=10.1053/j.ackd.2008.01.012|pmid=18334240}}</ref> | |||
| * Patients play a role as part of collaborative "treatment teams" addressing their diseases.<ref>{{cite web|last1=Frydman|first1=Gilles|title=Principles of Participatory Medicine|url=http://www.7word.net/?p=40|website=7 Words of Wisdom|archiveurl=http://web.archive.org/web/20080928225931/http://www.7word.net/?p=40|archivedate=28 September 2008|date=3 April 2008}}</ref> | |||
| * A patient is "mindfully" involved in treatment, by making behavioral changes, meditating, or similar acts.<ref>{{cite journal|last1=Kabat-Zinn|first1=Jon|authorlink1=Jon Kabat-Zinn|title=Commentary: Participatory medicine|journal=Journal of the European Academy of Dermatology and Venereology|date=July 2000|volume=14|issue=4|pages=239-240|doi=10.1046/j.1468-3083.2000.00062.x|pmid=11204505}} {{Subscription required}}</ref> | |||
| Conceptually, participatory medicine is related to concepts such as ], evidence based patient choice, ] (or Medicine 2.0), which also emphasize ].<ref>{{cite journal|last1=Eysenbach|first1=Gunther|title=Medicine 2.0: Social Networking, Collaboration, Participation, Apomediation, and Openness|journal=J Med Internet Res|date=25 August 2008|volume=10|issue=3|page=e22|doi=10.2196/jmir.1030|pmid=18725354|url=http://www.jmir.org/2008/3/e22/|pmc=2626430}} {{Open access}}</ref> Participatory medicine is a phenomenon similar to ] where healthcare providers and patients works in partnership, using modern communications tools, to increase the participation of the patient in their medical decisions. | |||
| Participatory medicine is a model of medical care, based on the development of a team that includes the patient (often referred to as an ]), patient groups and specialized social networks, the entire care team, and clinical researchers in a collaborative relationship. It requires equal access to all the data and equal rights in the decision-making process, based on all the data available, the information gathered and the collective wisdom of peer social networks. It is based on the understanding that optimally treating an individual patient suffering from a complex medical condition is often beyond any single individual's ability. | |||
| There is evidence that giving patients real-time, unfettered access to their own medical records increases understanding of health and improves their ability to take care of themselves. <ref>{{cite news|title=Engaging Patients Through OpenNotes: An Evaluation Using Mixed Methods|url=http://www.commonwealthfund.org/publications/in-the-literature/2016/feb/online-access-to-medical-records?omnicid=EALERT992586&mid=roylilley@roylilley.co.uk|accessdate=17 February 2016|publisher=Commonwealth Fund|date=16 February 2016}}</ref> | |||
| Many social networks for e-patients suffering from rare conditions have experimented with different iterations of the model, with varying degrees of reliance on technological tools, social networking, scientific involvement, advocacy and partnerships with both clinicians and translational researchers.{{Citation needed|date=January 2010}} Some e-patient groups are demanding a central role in the formulation of the research agenda for their conditions and in the design, review and pursuit of research.{{Citation needed|date=January 2010}} | |||
| ===Society for Participatory Medicine=== | |||
| In 2009 the Society for Participatory Medicine was incorporated by members of the e-Patient Scholars Working Group.{{Citation needed|date=December 2014}} Founding co-chairs were ], MD MPH, and "]" deBronkart, and founding president was Alan Greene, MD. In 2010 Greene and deBronkart became co-chairs, ACOR founder Gilles Frydman was elected president, and Sands became vice president.{{Citation needed|date=December 2014}} The Society's board revised the definition in 2010 to: | |||
| <blockquote>Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.</blockquote> | |||
| ==In health research== | |||
| Participatory Medicine is seen as a policy goal by some prominent health researchers and officials. In a December 2007 interview, ], the Director of the US ] stated: | |||
| <blockquote>As opposed to the doctor-centric, curative model of the past, the future is going to be patient-centric and proactive. It must be based on education and communication. | |||
| This is what I am pushing for at NIH. I like to change things and believe we need to be ahead of the curve. The challenge is to | |||
| channel the energy of this outstanding organization to help the public better care for itself. | |||
| No one knows exactly how to do this. It requires voluntary, intelligent participation, not passive acceptance. We can provide the information, but you have to do something for yourself.<ref>{{cite journal|last2=Zerhouini|first2=Elias A.|last1=Klose|first1=Christopher|title=The Promise of Personalized Medicine|journal=NIH MedlinePlus Magazine|date=2007|issue=Winter|pages=2-3|url=http://www.nih.gov/about/director/interviews/NLMmagazinewinter2007.pdf|format=PDF}}</ref> | |||
| </blockquote> | |||
| ==See also== | |||
| * ] | |||
| * ] | |||
| * ] | |||
| * ] | |||
| *] | |||
| ==References== | |||
| <references /> | |||
| ==Further reading== | |||
| *{{cite journal|last1=Dyson|first1=Esther|title=Why Participatory Medicine?|journal=Journal of Participatory Medicine|date=21 October 2009|volume=1|issue=1|page=e1|url=http://www.jopm.org/opinion/editorials/2009/10/21/why-participatory-medicine/|issn=2152-7202}} {{Open access}} | |||
| *{{cite journal|last1=Lundberg|first1=George D.|authorlink1=George D. Lundberg|title=Why Healthcare Professionals Should Practice Participatory Medicine: Perspective of a Long-Time Medical Editor|journal=Journal of Participatory Medicine|date=21 October 2009|volume=1|issue=1|page=e3|url=http://www.jopm.org/opinion/commentary/2009/10/21/why-health-care-professionals-should-practice-participatory-medicine-perspective-of-a-long-time-medical-editor-2/}} {{Open access}} | |||
| *{{cite book|author1=Institute of Medicine|authorlink1=Institute of Medicine|editor1-last=Aungst|editor1-first=Jessica|editor2-last=Haas|editor2-first=Amy|editor3-last=Ommaya|editor3-first=Alexander|display-editors = 3 |editor4-last=Green|editor4-first=Lawrence W.|title=Exploring Challenges, Progress, and New Models for Engaging the Public in the Clinical Research Enterprise: Clinical Research Roundtable Workshop Summary|date=2003|publisher=National Academies Press|location=Washington, DC|isbn=978-0-309-08946-3|url=http://www.nap.edu/catalog.php?record_id=10757}} | |||
| *{{cite journal|last1=Van de Belt|first1=Tom H.|last2=Engelen|first2=Lucien J.P.L.G.|last3=Berben|first3=Sivera A.A.|last4=Schoonhoven|first4=Lisette|authorlink2=Lucien Engelen|title=Definition of Health 2.0 and Medicine 2.0: A Systematic Review|journal=J Med Internet Res|date=11 July 2010|volume=12|issue=2|page=e18|doi=10.2196/jmir.1350|pmid=20542857|url=http://www.jmir.org/2010/2/e18/|pmc=2956229|quote=After selection and removing duplicates, we distinguished 46 unique definitions of Health 2.0 or Medicine 2.0 in 44 articles.}} {{Open access}} | |||
| ==External links== | |||
| * | |||
| * from Lucien Engelen's Opening speech on Second day Medicine 2.0. | |||
| {{Telemedicine navbox}} | |||
| ] | |||
| ] | |||
| ] | |||
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