Patient participation

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. Under this operating system, health care providers explain treatments and alternatives to patients in order to provide the necessary resources for patients to choose the treatment option that most closely aligns with their unique cultural and personal beliefs.[1] In contrast, the current dominant form of medicine, the biomedical care system, places physicians in a position of authority with patients playing a passive role in care.[2] Under this paradigm, known as medical paternalism, physicians instruct patients about what to do, and the patients often follow the physicians' advice.[3] Relatively recently, however, a general shift has occurred in which patients are more involved in medical decision-making than before.[4] A recent review of 115 patient participation studies, for example, 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.[5] Variations of each method, including medical paternalism and patient participation, may be preferred by different patients.

Many health agencies, including the American Cancer Society[6] and the American College of Physicians,[7] recommend a shared decision model in their medical practices.

Patient autonomy and informed consent

In recognition of the fact that many factors influence medical decisions, the basic premise of patient participation emphasizes 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; this occurs when the decision at hand is about a preference-sensitive condition.[8] 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. For this reason, informed consent is at the core of shared decision-making.[9] That is, without fully understanding the advantages and disadvantages of all treatment options, patients cannot engage in making decisions based on their personal values and beliefs.

The ecological model

The ecological model of patient participation, proposed by researcher and professor Donald J. Cegala and based on previous research by Richard Street,[10] includes four main components of patient participation.[11] The first of these 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.

Factors that predict participation

There are certain patient characteristics that influence the extent of involvement.[12] Research shows that female patients who are younger, more educated, and who have a less severe illness than other patients are more likely to participate in medical decisions.[12] 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.[13] 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.[13] 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.[13] Furthermore, research shows that race plays an important role in whether a patient participates. Though African American patients report that they participate less in shared decision-making than whites,[14] studies have shown that African American 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.[15]

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.[12] Researchers Arora and McHorney posit that this finding may be the result of 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.[12]

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. [16]

The role of physicians

Physicians, of course, play an important role in the patient participation model. 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 (e.g., 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.[17]

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.[18] It is important to note that, generally, physicians engage in more patient-centered communication when speaking with high participation patients rather than with low participation patients.[11] However, when a patient sees a physician of the same race, the patient perceives that physician as involving the patient more so than a physician of a different race.[14]

Patient empowerment

Patient empowerment is the granting of patients to take an active role in the decisions made about his or her own healthcare. Patient empowerment requires a patient to take responsibility for aspects of care such as respectful communications with one's doctors and other providers, patient safety, evidence gathering, smart consumerism (making care cost decisions in the United States), shared decision-making and more.[19]

To ease patients’ empowerment, different countries have made laws and run multiple campaigns to raise awareness of these matters. For example, the French Act of 2 March 2002 aims for a ‘‘health democracy’’ in which patients’ rights and responsibilities are revisited, and which gives patients an opportunity to take control of their health. Similar enactments have been passed in countries such as Croatia, Hungary and the Catalan region. The same year, the UK passed The Penalty Charge for Patients 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 through various policies with the cooperation of the World Health Organisation. Various Medical Associations have also followed the path of patients’ empowerment through different Bill of Rights or Declarations.[20]

Consequences

Benefits

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.[21] Also, research has shown that patient participation leads to higher judgments of the quality of care.[22] Furthermore, patient participation leads to greater self-efficacy in patients, which in turn, leads to better health outcomes.[23] When a patient participates more in the decision-making process, the frequency of self-management behaviors increases, as well.[24] Self-management behaviors fall into three broad categories: health behaviors (e.g., exercise); consumeristic behaviors (e.g., reading the risks about a new treatment); and disease-specific management strategies.[25] 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.[26]

Previous research has demonstrated that providing patients with personal coronary risk information may assist patients in improving cholesterol levels.[27] These 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.[28]

Disadvantages

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 due to 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.[29] 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.[30]

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.[31] The communication of scientific uncertainty may lead to decision dissatisfaction.[31] 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.[32] Physicians who encourage patient participation can help the patient make a decision that is aligned with the patients' values and preferences.

Decision aids

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.[33] Recently, interactive software or internet websites have helped bridge the divide between physician and patients.[34][35][36] Recent research has shown that the use of decision aids may increase patients' trust in physicians, thereby facilitating the shared decision-making process.[37]

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 fourteen countries around the world, that will help determine the quality of patient decision aids.[38] 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.

See also

References

  1. ↑ Florin, J; Ehrenberg, A.; Ehnfors, M. (2008). "Clinical decision-making: Predictors of patient participation in nursing care". Journal of Clinical Nursing 17 (21): 2935–2944. doi:10.1111/j.1365-2702.2008.02328.x.
  2. ↑ Lyttle, D.J.; Ryan, A. (2010). "Factors' influencing older patients' participation in care: A review of the literature". International Journal of Older People Nursing 5 (4): 274–282. doi:10.1111/j.1748-3743.2010.00245.x.
  3. ↑ Buchanan A (1978). "Medical paternalism". Philos Public Aff 7 (4): 370–90. PMID 11664929.
  4. ↑ Epstein RM, Campbell TL, Cohen-Cole SA, McWhinney IR, Smilkstein G (October 1993). "Perspectives on patient-doctor communication". J Fam Pract 37 (4): 377–88. PMID 8409892.
  5. ↑ Chewning, Betty; Bylund, Carma L.; Shah, Bupendra; Arora, Neeraj K.; Gueguen, Jennifer A.; Makoul, Gregory (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.
  6. ↑ von Eschenbach, A.; Ho, R.; Murphy, G. P.; Cunningham, M.; Lins, N. (1997). "American Cancer Society guideline for the early detection of prostate cancer: update 1997". CA Cancer Journal Clin 17: 261–264.
  7. ↑ Coley CM, Barry MJ, Mulley AG (March 1997). "Screening for prostate cancer. American College of Physicians". Ann. Intern. Med. 126 (6): 480–4. doi:10.7326/0003-4819-126-6-199703150-00011. PMID 9072936.
  8. ↑ Mulley AG, Eagle KA (1988). "What is inappropriate care?". JAMA 260 (4): 540–1. doi:10.1001/jama.1988.03410040112039. PMID 3290528.
  9. ↑ 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.
  10. ↑ Street, R. R. (2003). Communication in medical encounters: An ecological perspective. Lawrence Erlbaum Associates Publishers. pp. 63–89.
  11. 1 2 Cegala DJ (2011). "An exploration of factors promoting patient participation in primary care medical interviews". Health Commun 26 (5): 427–36. doi:10.1080/10410236.2011.552482. PMID 21416422.
  12. 1 2 3 4 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.
  13. 1 2 3 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.
  14. 1 2 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.
  15. ↑ 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 3482118. PMID 21127318.
  16. ↑ "Engaging Patients Through OpenNotes: An Evaluation Using Mixed Methods". Commonwealth Fund. 16 February 2016. Retrieved 17 February 2016.
  17. ↑ Meredith L, Stewart M, Brown JB (2001). "Patient-centered communication scoring method report on nine coded interviews". Health Commun 13 (1): 19–31. doi:10.1207/S15327027HC1301_03. PMID 11370920.
  18. ↑ Stewart, M. A. (1984). "What is a successful doctor–patient interview? A study of interactions and outcomes.". Social Science & Medicine 19 (2): 167–175. doi:10.1016/0277-9536(84)90284-3.
  19. ↑ "Guide to Being an Empowered Patient". About.com.
  20. ↑ LAUR A., Patients’ responsibilities for their health, Medical Legal Journal, September 2013 vol. 81 no. 3 119-123, http://mlj.sagepub.com/content/81/3/119.full
  21. ↑ 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.
  22. ↑ 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 3140261. PMID 21307118.
  23. ↑ 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 1495033. PMID 11972720.
  24. ↑ 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 1955271. PMID 17610432.
  25. ↑ 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 1361231. PMID 16336556.
  26. ↑ 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.
  27. ↑ 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.
  28. ↑ 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 2384995. PMID 18474884.
  29. ↑ Larsson IE, Sahlsten MJ, Segesten K, Plos KA (September 2011). "Patients' perceptions of barriers for participation in nursing care". Scand J Caring Sci 25 (3): 575–82. doi:10.1111/j.1471-6712.2010.00866.x. PMID 21241347.
  30. ↑ Graugaard, Peter; Finset, Arnstein (2000). "Trait anxiety and reactions to patient-centered and doctor-centered styles of communication: An experimental study". Psychosomatic Medicine 62 (1): 33–39.
  31. 1 2 Politi MC, Clark MA, Ombao H, Dizon D, Elwyn G (March 2011). "Communicating uncertainty can lead to less decision satisfaction: a necessary cost of involving patients in shared decision making?". Health Expect 14 (1): 84–91. doi:10.1111/j.1369-7625.2010.00626.x. PMC 3010418. PMID 20860780.
  32. ↑ Cribb A, Entwistle VA (June 2011). "Shared decision making: trade-offs between narrower and broader conceptions". Health Expect 14 (2): 210–9. doi:10.1111/j.1369-7625.2011.00694.x. PMID 21592264.
  33. ↑ 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.
  34. ↑ 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.
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  36. ↑ 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.
  37. ↑ Nannenga, M. R.; Montori, V. M.; Weymiller, A. J.; Smith, S. A.; Christianson, T. H.; Bryant, S. C.; Guyatt, G. H. (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.x.
  38. ↑ 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 1553508. PMID 16908462.
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