Patient participation

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As part of the patient participation model, patients work with physicians to decide on the best treatment option.

Patient participation, also called shared decision-making, is a process in which both the patient and physician contribute to the medical decision-making process. Health care providers explain treatments and alternatives to patients to provide the necessary resources for patients to choose the treatment option that best aligns with their unique cultural and personal beliefs.[1] Participatory medicine,[2] patient-centered care,[3] and health consumerism[4] are all synonyms for patient participation.

In contrast, the biomedical care system places physicians in a position of authority with patients playing a passive role in care.[5] Physicians instruct patients about what to do, and the patients often follow the physicians' advice.[6]

A general paradigm shift has occurred in which patients are more involved in medical decision-making than before.[7] For example, a recent review of 115 patient participation studies found that the majority of respondents preferred to participate in medical decision-making in only 50% of studies prior to 2000, while 71% of studies after 2000 found a majority of respondents who wanted to participate.[8] Many health agencies, including the American Cancer Society[9] and the American College of Physicians,[10] recommend patient participation in their medical practice guidelines.

Patient autonomy and informed consent[edit]

The basic premise of patient participation is patient autonomy. The model recognizes that patients have personal values that influence the interpretation of risks and benefits differently from a physician. Frequently, there is more than one option, with no clear choice of which option is best; that occurs when the decision at hand is about a preference-sensitive condition.[11] In certain situations, for example, the physician's point of view may differ from the decision that aligns most with the patient's values, judgments, and opinions. A physician may also be driven by financial incentives such as fee-for-service. Thus, informed consent is at the core of shared decision-making.[12] Without fully understanding the advantages and disadvantages of all treatment options, patients cannot engage in making decisions based on their personal values and beliefs.


Factors that predict participation[edit]

There are certain patient characteristics that influence the extent of involvement.[13] Research shows that female patients who are younger and more educated and have a less severe illness than other patients are more likely to participate in medical decisions.[13] That is, an increase in age leads to a decrease in desire to participate, while higher levels of education increase participation levels. However, other research has offered conflicting evidence for the effect of age on level of participation. One study found that age did not inversely relate to participation levels.[14] In addition, numeracy levels may play an important role in patient participation. Recent research has shown that, in general, low-numeracy individuals in both Germany and the United States prefer to play a more passive role than their high-numeracy counterparts.[14] That is, individuals who are not as fluent with numbers and statistics tended to let their physicians make medical decisions without much input from the patients. In general, however, Americans play a more active role in the physician-patient relationship, by performing activities like asking follow-up questions and researching treatment options, than do Germans.[14] Furthermore, research shows that race plays an important role in whether a patient participates. Though black patients report that they participate less in shared decision-making than white patients,[15] studies have shown that black patients desire to participate just as much as their white counterparts and are more likely to report initiating conversation about their health care with their physicians.[16]

Interestingly, individuals who place a higher value on their health are more likely to play a passive role when it comes to medical decision-making than those who placed a lower value on health.[13] Researchers Arora and McHorney posit that finding may be the result of their apprehension when it comes to health-related concerns among those who place a high value on health, leading to a tendency to let an expert, rather than themselves, make important medical decisions.[13]

There is some evidence that giving patients real-time, unfettered access to their own medical records increases their understanding of their health and improves their ability to take care of themselves.[17]

Ecological model[edit]

The ecological model of patient participation, proposed by researcher and professor Donald J. Cegala and based on previous research by Richard Street,[18] includes four main components of patient participation.[19] The first is termed information seeking. Assessment for this component includes the number of health-related questions the patient asks along with the number of times the patient asks for the physician to verify information. Examples of information verifying may include asking a physician to repeat information or summarizing what the physician said in order to ensure that the patient understood the information. The second facet of patient participation, as proposed by this model, is assertive utterances, which may include making recommendations to physicians, expressing an opinion or preference, or expressing disagreement. The third component of the model is information provision of symptoms and medical history with or without prompting from the physician. The final component of patient participation is expressions of concern, including affective responses such as anxiety, worry, or negative feelings. The extent of participation can be determined based on how often a patient displays these four overarching behaviors.

Decision aids[edit]

Patient participation increasingly relies on the use of decision aids in assisting the patients in choosing the best treatment option. Patient decision aids, which may include leaflets, video or audio tapes, or interactive media, supplement the patient-physician relationship and assist patients in making medical decisions that most closely aligns with their values and preferences.[20] Recently, interactive software or internet websites have helped bridge the divide between physician and patients.[21][22][23] Recent research has shown that the use of decision aids may increase patients' trust in physicians, thereby facilitating the shared decision-making process.[24]

The International Patient Decision Aid Standards (IPDAS) Collaboration, a group of researchers led by professors Annette O'Connor in Canada and Glyn Elwyn in England, has published a set of standards, representing the efforts of more than 100 participants from 14 countries around the world to will help determine the quality of patient decision aids.[25] The report determined that there are certain components of an aid, such as providing information about options, using patient stories, and disclosing conflicts of interest, that will assist patients and health practitioners to assess the content, development process, and effectiveness of decision aids.

Patient-centered care[edit]

Physicians, of course, play an important role in the patient participation, and patient-centered care focuses on how physicians and other clinicians involve patients in the healthcare process. In 2001, 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."[26] However, in 2009, Institute for Healthcare Improvement president Donald Berwick proposed a more nuanced definition: "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."[27]


Researchers have developed specific measures to evaluate the effectiveness of a physician-patient relationship. One such measure explores the following three components of patient-centered behavior: physician's general ability to conceptualize both illness and disease in relation to a patient's life; physicians exploring the full context of illness in the patient's life setting (like work, social supports, family) and personal development; physicians' ability to reach common ground with the participants in which the treatment goals and management strategies, nature of the problems and priorities, and roles of both the physician and patient are addressed.[28]

Previous research has demonstrated that increased patient-centered behavior by physicians leads to greater compliance of patients' at-home medical care, such as taking pills.[29] It is important to note that generally, physicians engage in more patient-centered communication when they speaking with high participation patients rather than with low participation patients.[19] However, when a patient sees a physician of the same race, the patient perceives that physician as involving the patient more than a physician of a different race.[15]

Patient empowerment[edit]

Patient empowerment is the granting of patients to take an active role in the decisions made about their own healthcare. Patient empowerment requires patients to take responsibility for aspects of care such as respectful communications with one's doctors and other providers, patient safety, evidence gathering, smart consumerism, shared decision-making, and more.[30]

The EMPAThiE study defined an empowered patient as a patient who "… has control over the management of their condition in daily life. They take action to improve the quality of their life and have the necessary knowledge, skills, attitudes and self-awareness to adjust their behavior and to work in partnership with others where necessary, to achieve optimal well-being."[31]

To ease patients' empowerment, different countries have made laws and run multiple campaigns to raise awareness of these matters. For example, a law Act in France on 2 March 2002 aims for a "health democracy" in which patients' rights and responsibilities are revisited, and it gives patients an opportunity to take control of their health. Similar enactments have been passed in countries such as Croatia, Hungary, and the Catalonia. The same year, Britain passed a penalty charge to remind them of their responsibility in healthcare.

In 2009, British and Australian campaigns were launched to highlight the costs of unhealthy lifestyles and the need for a culture of responsibility. The European Union took this issue seriously and since 2005, has regularly reviewed the question of patients' rights by various policies with the cooperation of the World Health Organization. Various medical associations have also followed the path of patients' empowerment by bills of rights or declarations.[32]


A recent study found that individuals who participate in shared decision-making are more likely to feel secure and may feel a stronger sense of commitment to recover.[33] Also, research has shown that patient participation leads to higher judgments of the quality of care.[34] Furthermore, patient participation leads to greater self-efficacy in patients, which in turn, leads to better health outcomes.[35] When a patient participates more in the decision-making process, the frequency of self-management behaviors increases, as well.[36] Self-management behaviors fall into three broad categories: health behaviors (like exercise); consumeristic behaviors (like reading the risks about a new treatment); and disease-specific management strategies.[37] In a similar vein, a recent study found that among patients with diabetes, the more an individual remembers information given by a physician, the more the patient participated in self-care behaviors at home.[38]

Previous research has demonstrated that providing patients with personal coronary risk information may assist patients in improving cholesterol levels.[39] Such findings are most likely attributed to an improvement in self-management techniques in response to the personalized feedback from physicians. Additionally, the findings of another study indicate that the use of a cardiovascular risk calculator led to increased patient participation and satisfaction with the treatment decision process and outcome and reduced decisional regret.[40]


Some patients do not find the patient participation model to be the best approach to care. A qualitative study found that barriers to patient participation may include a patient's desire to avoid participation from lack of perceived control over the situation, a medical professional's inability to make an emotional connection with the patient, an interaction with an overconfident and overly-assertive medical professional, and general structural deficits in care that may undermine opportunities for a patient to exert control over the situation.[41] Furthermore, dispositional factors may play an important role in the extent to which a patient feels comfortable with a participating in medical decisions. Individuals who exhibit high trait anxiety, for example, prefer not to participate in medical decision-making.[42]

For those who do participate in decision-making, there are potential disadvantages. As patients take part in the decision process, physicians may communicate uncertain or unknown evidence about the risks and benefits of a decision.[43] The communication of scientific uncertainty may lead to decision dissatisfaction.[43] Critics of the patient participation model assert that physicians who choose not to question and challenge the assumptions of patients do a medical disservice to patients, who are overall less knowledgeable and skilled than the physician.[44] Physicians who encourage patient participation can help the patient make a decision that is aligned with the patients' values and preferences.

See also[edit]


  1. ^ Florin, Jan; Ehrenberg, Anna; Ehnfors, Margareta (November 2008). "Clinical decision-making: Predictors of patient participation in nursing care". Journal of Clinical Nursing. 17 (21): 2935–44. doi:10.1111/j.1365-2702.2008.02328.x. PMID 19034992. (Subscription required (help)). 
  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. ^ International Alliance of Patients' Organizations (2016). "Declaration on: Patient-Centered Healthcare" (PDF). Retrieved 30 June 2016. 
  4. ^ Robinson, James C. (December 2005). "Managed Consumerism In Health Care". Health Affairs. 24 (6): 1478–89. doi:10.1377/hlthaff.24.6.1478Freely accessible. ISSN 0278-2715. PMID 16284020. 
  5. ^ Lyttle, Diane J.; Ryan, Assumpta (December 2010). "Factors' influencing older patients' participation in care: A review of the literature". International Journal of Older People Nursing. 5 (4): 274–82. doi:10.1111/j.1748-3743.2010.00245.x. PMID 21083806. (Subscription required (help)). 
  6. ^ Buchanan, Allen (Summer 1978). "Medical paternalism". Philosophy & Public Affairs. 7 (4): 370–90. JSTOR 2264963. PMID 11664929. (Subscription required (help)). 
  7. ^ Epstein, Ronald M.; Campbell, Thomas L.; Cohen-Cole, Steven A.; McWhinney, Ian R.; Smilkstein, Gabriel (October 1993). "Perspectives on patient-doctor communication". Journal of Family Practice. 37 (4): 377–88. PMID 8409892. 
  8. ^ Chewning, Betty; Bylund, Carma L.; Shah, Bupendra; Arora, Neeraj K.; Gueguen, Jennifer A.; Makoul, Gregory (January 2012). "Patient preferences for shared decisions: A systematic review". Patient Education and Counseling. 86 (1): 9–18. doi:10.1016/j.pec.2011.02.004. PMC 4530615Freely accessible. PMID 21474265. 
  9. ^ von Eschenbach, Andrew; Ho, Reginald; Murphy, Gerald P.; Cunningham, Myles; Lins, Nancy (September 1997). "American Cancer Society guideline for the early detection of prostate cancer: update 1997". CA: A Cancer Journal for Clinicians. 47 (5): 261–4. doi:10.3322/canjclin.47.5.261Freely accessible. PMID 9314820. 
  10. ^ Coley, Christopher M.; Barry, Michael J.; Mulley, Albert G. (15 March 1997). "Clinical Guideline: Part III: Screening for Prostate Cancer"Paid subscription required. Annals of Internal Medicine. 126 (6): 480–4. doi:10.7326/0003-4819-126-6-199703150-00011. PMID 9072936. 
  11. ^ Mulley AG, Eagle KA (1988). "What is inappropriate care?". JAMA. 260 (4): 540–1. doi:10.1001/jama.1988.03410040112039. PMID 3290528. 
  12. ^ Whitney SN, McGuire AL, McCullough LB (January 2004). "A typology of shared decision making, informed consent, and simple consent". Ann. Intern. Med. 140 (1): 54–9. doi:10.7326/0003-4819-140-1-200401060-00012. PMID 14706973. 
  13. ^ a b c d Arora NK, McHorney CA (March 2000). "Patient preferences for medical decision making: who really wants to participate?". Med Care. 38 (3): 335–41. doi:10.1097/00005650-200003000-00010. PMID 10718358. 
  14. ^ a b c Galesic M, Garcia-Retamero R (May 2011). "Do low-numeracy people avoid shared decision making?". Health Psychol. 30 (3): 336–41. doi:10.1037/a0022723. PMID 21553977. 
  15. ^ a b Cooper-Patrick L, Gallo JJ, Gonzales JJ, Vu HT, Powe NR, Nelson C, Ford DE (August 1999). "Race, gender, and partnership in the patient-physician relationship". JAMA. 282 (6): 583–9. doi:10.1001/jama.282.6.583. PMID 10450723. 
  16. ^ Peek ME, Tang H, Cargill A, Chin MH (2011). "Are there racial differences in patients' shared decision-making preferences and behaviors among patients with diabetes?". Med Decis Making. 31 (3): 422–31. doi:10.1177/0272989X10384739. PMC 3482118Freely accessible. PMID 21127318. 
  17. ^ "Engaging Patients Through OpenNotes: An Evaluation Using Mixed Methods". Commonwealth Fund. 16 February 2016. Retrieved 17 February 2016. 
  18. ^ Street, Richard L. (2003). "Communication in medical encounters: An ecological perspective". In Thompson, Teresa L.; Dorsey, Alicia; Parrott, Roxanne; Miller, Katherine. The Routledge Handbook of Health Communication. Routledge Communication Series. Routledge. pp. 63–89. ISBN 978-1-135-64766-7 – via Google Books. 
  19. ^ a b Cegala, Donald J. (July 2011). "An exploration of factors promoting patient participation in primary care medical interviews". Health Communication. 26 (5): 427–36. doi:10.1080/10410236.2011.552482. PMID 21416422. (Subscription required (help)). 
  20. ^ van Til, J.A.; Drossaert, C. C.; Renzenbrink, G. J.; Snoek, G. J.; Dijkstra, E.; Stiggelbout, A. M.; IJzerman, M. J. (2010). "Feasibility of web-based decision aids in neurological patients". Journal of Telemedicine and Telecare. 16 (1): 48–52. doi:10.1258/jtt.2009.001012. 
  21. ^ Frosch DL, Bhatnagar V, Tally S, Hamori CJ, Kaplan RM (February 2008). "Internet patient decision support: a randomized controlled trial comparing alternative approaches for men considering prostate cancer screening". Arch. Intern. Med. 168 (4): 363–9. doi:10.1001/archinternmed.2007.111. PMID 18299490. 
  22. ^ Barry MJ (January 2002). "Health decision aids to facilitate shared decision making in office practice". Ann. Intern. Med. 136 (2): 127–35. doi:10.7326/0003-4819-136-2-200201150-00010. PMID 11790064. 
  23. ^ Kypri K, Langley JD, Saunders JB, Cashell-Smith ML, Herbison P (March 2008). "Randomized controlled trial of web-based alcohol screening and brief intervention in primary care". Arch. Intern. Med. 168 (5): 530–6. doi:10.1001/archinternmed.2007.109. PMID 18332300. 
  24. ^ Nannenga, Michael R.; Montori, Victor M.; Weymiller, Audrey J.; Smith, Steven A.; Christianson, Teresa J.H.; Bryant, Sandra C.; Gafni, Amiram; Charles, Cathy; Mullan, Rebecca J.; Jones, Lesley A.; Bolona, Enrique R.; Guyatt, Gordon H. (March 2009). "A treatment decision aid may increase patient trust in the diabetes specialist. The Statin Choice randomized trial". Health Expectations. 12 (1): 38–44. doi:10.1111/j.1369-7625.2008.00521.xFreely accessible. PMC 5060475Freely accessible. PMID 19250151.  open access publication – free to read
  25. ^ Elwyn G, O'Connor A, Stacey D, Volk R, Edwards A, Coulter A, Thomson R, Barratt A, Barry M, Bernstein S, Butow P, Clarke A, Entwistle V, Feldman-Stewart D, Holmes-Rovner M, Llewellyn-Thomas H, Moumjid N, Mulley A, Ruland C, Sepucha K, Sykes A, Whelan T (August 2006). "Developing a quality criteria framework for patient decision aids: online international Delphi consensus process". BMJ. 333 (7565): 417. doi:10.1136/bmj.38926.629329.AE. PMC 1553508Freely accessible. PMID 16908462. 
  26. ^ 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:10.17226/10027Freely accessible. ISBN 978-0-309-07280-9 – via National Academies Press. 
  27. ^ Berwick, Donald M. (July 2009). "What Patient-Centered Should Mean: Confessions of an Extremist". Health Affairs. 28 (4): w555–65. doi:10.1377/hlthaff.28.4.w555Freely accessible. PMID 19454528. Retrieved 19 July 2016. 
  28. ^ Meredith, Leslie; Stewart, Moira; Brown, Judith Belle (2001). "Patient-centered communication scoring method report on nine coded interviews". Health Communication. 13 (1): 19–31. doi:10.1207/S15327027HC1301_03. PMID 11370920. (Subscription required (help)). 
  29. ^ Stewart, Moira A. (1984). "What is a successful doctor–patient interview? A study of interactions and outcomes". Social Science & Medicine. 19 (2): 167–75. doi:10.1016/0277-9536(84)90284-3. PMID 6474233. (Subscription required (help)). 
  30. ^ Torrey, Trisha (25 November 2014). "The Wise Patient's Guide to Being an Empowered Patient". Verywell. About, Inc. 
  31. ^ Suñol, Rosa; Somekh, David; Orrego, Carola; et al. (10 November 2014). EMPATHiE: Empowering patients in the management of chronic diseases (PDF) (Report). EU Health Programme; Consumers, Health, Agriculture and Food Executive Agency. p. 6. 
  32. ^ Laur, Audrey (September 2013). "Patients' responsibilities for their health". Medical Legal Journal. 81 (3): 119–123. doi:10.1177/0025817213497149. PMID 24057310.  (subscription required)
  33. ^ Höglund AT, Winblad U, Arnetz B, Arnetz JE (September 2010). "Patient participation during hospitalization for myocardial infarction: perceptions among patients and personnel". Scand J Caring Sci. 24 (3): 482–9. doi:10.1111/j.1471-6712.2009.00738.x. PMID 20230518. 
  34. ^ Weingart SN, Zhu J, Chiappetta L, Stuver SO, Schneider EC, Epstein AM, David-Kasdan JA, Annas CL, Fowler FJ, Weissman JS (June 2011). "Hospitalized patients' participation and its impact on quality of care and patient safety". Int J Qual Health Care. 23 (3): 269–77. doi:10.1093/intqhc/mzr002. PMC 3140261Freely accessible. PMID 21307118. 
  35. ^ Heisler M, Bouknight RR, Hayward RA, Smith DM, Kerr EA (April 2002). "The relative importance of physician communication, participatory decision making, and patient understanding in diabetes self-management". J Gen Intern Med. 17 (4): 243–52. doi:10.1046/j.1525-1497.2002.10905.x. PMC 1495033Freely accessible. PMID 11972720. 
  36. ^ Hibbard JH, Mahoney ER, Stock R, Tusler M (August 2007). "Do increases in patient activation result in improved self-management behaviors?". Health Serv Res. 42 (4): 1443–63. doi:10.1111/j.1475-6773.2006.00669.x. PMC 1955271Freely accessible. PMID 17610432. 
  37. ^ Hibbard JH, Mahoney ER, Stockard J, Tusler M (December 2005). "Development and testing of a short form of the patient activation measure". Health Serv Res. 40 (6 Pt 1): 1918–30. doi:10.1111/j.1475-6773.2005.00438.x. PMC 1361231Freely accessible. PMID 16336556. 
  38. ^ Bundesmann R, Kaplowitz SA (November 2011). "Provider communication and patient participation in diabetes self-care". Patient Educ Couns. 85 (2): 143–7. doi:10.1016/j.pec.2010.09.025. PMID 21035296. 
  39. ^ Grover SA, Lowensteyn I, Joseph L, Kaouache M, Marchand S, Coupal L, Boudreau G (November 2007). "Patient knowledge of coronary risk profile improves the effectiveness of dyslipidemia therapy: the CHECK-UP study: a randomized controlled trial". Arch. Intern. Med. 167 (21): 2296–303. doi:10.1001/archinte.167.21.2296. PMID 18039987. 
  40. ^ Krones T, Keller H, Sönnichsen A, Sadowski EM, Baum E, Wegscheider K, Rochon J, Donner-Banzhoff N (2008). "Absolute cardiovascular disease risk and shared decision making in primary care: a randomized controlled trial". Ann Fam Med. 6 (3): 218–27. doi:10.1370/afm.854. PMC 2384995Freely accessible. PMID 18474884. 
  41. ^ Larsson, Inga E.; Sahlsten, Monika J.M.; Segesten, Kerstin; Plos, Kaety A.E. (September 2011). "Patients' perceptions of barriers for participation in nursing care". Scandinavian Journal of Caring Sciences. 25 (3): 575–82. doi:10.1111/j.1471-6712.2010.00866.x. PMID 21241347. (Subscription required (help)). 
  42. ^ Graugaard, Peter; Finset, Arnstein (January 2000). "Trait anxiety and reactions to patient-centered and doctor-centered styles of communication: An experimental study". Psychosomatic Medicine. 62 (1): 33–39. doi:10.1097/00006842-200001000-00005. PMID 10705909. (Subscription required (help)). 
  43. ^ a b Politi, Mary C.; Clark, Melissa A.; Ombao, Hernando; Dizon, Don; Elwyn, Glyn (March 2011). "Communicating uncertainty can lead to less decision satisfaction: a necessary cost of involving patients in shared decision making?". Health Expectations. 14 (1): 84–91. doi:10.1111/j.1369-7625.2010.00626.xFreely accessible. PMC 3010418Freely accessible. PMID 20860780.  open access publication – free to read
  44. ^ Cribb, Alan; Entwistle, Vikki A. (June 2011). "Shared decision making: trade-offs between narrower and broader conceptions". Health Expectations. 14 (2): 210–9. doi:10.1111/j.1369-7625.2011.00694.xFreely accessible. PMID 21592264.  open access publication – free to read

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