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Chapter 50. Other Practices Related to Patient Participation

Laura T. Pizzi, Pharm.D.
Neil I. Goldfarb
David B. Nash, M.D., M.B.A.
Thomas Jefferson University School of Medicine and Office of Health Policy & Clinical Outcomes


A number of practices and resources aim to facilitate the role of patients as their own safety advocates. These practices are not intended to shift the burden of monitoring medical error to patients. Rather, they encourage patients to share responsibility for their own safety. Although these types of interventions hold promise for enhanced patient safety, there is yet insufficient evidence of their effectiveness. Therefore, this chapter is a brief, general survey of practices related to patient participation; there are few practices that have been studied with sufficient rigor to merit a full evidence-based review. This chapter explicitly excludes consumer report cards, since such tools presently are more relevant to healthcare quality than patient safety.1,2 There is a substantial literature on the patient's role in quality improvement related to specific diseases—e.g., self-management and general education for patients with certain chronic diseases such as asthma,3-5 diabetes,6-8 and rheumatoid arthritis,9-12 as well preoperative educational and preparation programs for patients undergoing cardiac surgery. 13 This literature was not reviewed in detail, both because it falls outside our definition of patient safety practices (Chapter 1) by virtue of its disease specificity, and because the volume of material was overwhelming given the time allocated for the production of this Compendium. There are obvious additional opportunities to promote patient involvement in helping protect their own safety drawn from the disease-specific experiences of the past, and this should be the subject of further exposition and analysis.

Patient Education Materials Regarding Patient Safety

Books, Web sites and consumer group publications abound with healthcare and medical information for patients.14 The goal of these resources is to enable consumers to arm themselves with the knowledge to protect themselves. Healthcare providers may wish to distribute such materials to patients to alert them of the possible problem of medical error, and encourage those that would like to take appropriate action.

The Agency for Healthcare Research and Quality15 produces a 5-page "Patient Fact Sheet" on preventing medical errors. This fact sheet educates patients on the problem of medical error, and provides 20 tips patients may follow to avoid medical error, ranging from properly measuring liquid medications to ensuring healthcare employees have washed their hands.

Proprietary educational materials have also been developed. For instance, DoctorQuality, Inc., a quality management company that provides products and services to healthcare consumers, purchasers, and providers, has developed online and offline tools that providers and patients can use to improve care,16 including patient safety workbooks and quality guides for a variety of diagnoses and surgical procedures. The books describe the key events that patients should anticipate at each step of diagnosis and treatment, identify high-risk points in the treatment plan where mistakes are more likely occur,14 and provide tips as to how to avert common errors.

Patients may also find resources in the popular literature. In Lerner's Consumer Guide to Health Care, the authors coach readers on questions to ask their physicians and ways to avoid medical mistakes.17 Dr. Robert Arnot's book, The Best Medicine,18 educates patients about specific procedures (e.g., coronary artery bypass surgery, cesarean section, hysterectomy, and carotid endarterectomy). Potential complications of each of these procedures are described, and volumes, average lengths of stay, and complication rates of major hospitals are presented.

Health information on the Web has increased patients' desire for medical information and raised significant issues regarding patient safety and the manner in which patients approach their doctors for information.19 A recent study revealed that many physicians believe that Web resources can distance patients from physicians and have an adverse effect on patient safety. Specifically, there is concern that patients can receive and believe misinformation, or read of treatments and procedures unfamiliar to physicians, and in both instances lower their trust in physician recommendations.20 Other physicians see the Web as a positive development in patient safety because when patients approach their doctors prepared with questions, office visits run more smoothly, and the physician's counsel may be better received.20

Similar issues surround the topic of direct-to-consumer (DTC) marketing by pharmaceutical companies.21 In 1997 the Food and Drug Administration relaxed restrictions on television and advertising for prescription medication. Drug companies responded with an explosion of marketing in all forms of media. DTC advertising may stimulate discussion between patients and their doctors about treatment options, but it also drives patients to demand newer and costlier medications, when less expensive treatments might be effective.22 When doctors resist, 46% of patients try to persuade them to change the original recommendation and another 24% attempt to obtain the requested drugs from another physician.22 These sort of interactions erode the physician-patient relationship and may jeopardize safety by promoting polypharmacy.

Practices to Improve Non-compliance

Compliance with medical advice is widely discussed in the literature and non-compliance with treatment may result in adverse drug events.23 The frequency of non-compliance is higher than many healthcare professionals realize.24 Non-compliance may arise from misunderstandings regarding instructions for drug use, self-care, or other factors. In addition, some of these misunderstandings may arise from remediable factors, such as language barriers25 or low health literacy.26,27 Simple solutions, such as using a trained interpreter instead of a family member or untrained volunteer, and providing self-care and other literature in multiple languages and bilingual versions may improve patient understanding. Other interventions, such as patient education publications, have been proposed to reduce adverse drug events due to non-compliance.28

Access to Medical Records

Although patient access to their own medical records is regulated in some states, these statutes differ across the United States.29 Some states mandate certain levels of access for patients; others limit access or allow the provider to deem access appropriate or inappropriate. Other countries, such as Britain, have passed legislation requiring that providers allow patients to have complete access to their medical records.30 Some argue that access to medical records may encourage patients to take a more active role in their own healthcare, allow patients to become better informed about their care, and increase rapport. Others argue that staff may modify medical records due to concerns about offending the patient, and will be diverted by the time needed to explain information contained in the records. Finally, still others express concern that patients may be unnecessarily worried by what they read.30 No studies in the United States have analyzed these competing views, and therefore it is not clear whether cultural norms reported in studies from other countries are applicable here, and whether allowing patients to review their own charts will have the intended effect of reducing errors.


With the growing level of consumerism in healthcare,31 patients may wish to take a more active role in reducing their chance of experiencing a medical error. However, the research regarding the ways in which providers can facilitate this role for patients who desire it is lacking. More research is needed on the efficacy of these interventions regarding medical error reduction and on patients' willingness and ability to use them.


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2. Marshall MN, Shekelle PG, Leatherman S, Brook RH. The public release of performance data: what do we expect to gain? A review of the evidence JAMA 2000;283:1866-1874.

3. Lahdensuo A, Haahtela T, Herrala J, Kava T, Kiviranta K, Kuusisto P, et al. Randomised comparison of guided self management and traditional treatment of asthma over one year. BMJ 1996;312:748-752.

4. Gibson PG, Coughlan J, Wilson AJ, Abramson M, Bauman A, Hensley MJ, et al. Self-management education and regular practitioner review for adults with asthma. In: The Cochrane Library, Issue 2, 2001. Oxford: Update Software.

5. Gibson PG, Coughlan J, Wilson AJ, Hensley MJ, Abramson M, Bauman A, et al. Limited (information only) patient education programs for adults with asthma. In: The Cochrane Library, 2001. Oxford: Update Software.

6. Fain JA, Nettles A, Funnell MM, Charron D. Diabetes patient education research: an integrative literature review. Diabetes Educ 1999;25:7-15.

7. Norris SL, Engelgau MM, Narayan KM. Effectiveness of self-management training in type 2 diabetes: a systematic review of randomized controlled trials. Diabetes Care 2001;24:561-587.

8. Hampson SE, Skinner TC, Hart J, Storey L, Gage H, Foxcroft D, et al. Effects of educational and psychosocial interventions for adolescents with diabetes mellitus: a systematic review. Health Technol Assess 2001;5:1-79.

9. Superio-Cabuslay E, Ward MM, Lorig KR. Patient education interventions in osteoarthritis and rheumatoid arthritis: a meta-analytic comparison with nonsteroidal antiinflammatory drug treatment. Arthritis Care Res 1996;9:292-301.

10. Brus H, van de Laar M, Taal E, Rasker J, Wiegman O. Compliance in rheumatoid arthritis and the role of formal patient education. Semin Arthritis Rheum 1997;26:702-710.

11. Brus HL, van de Laar MA, Taal E, Rasker JJ, Wiegman O. Effects of patient education on compliance with basic treatment regimens and health in recent onset active rheumatoid arthritis. Ann Rheum Dis 1998;57:146-151.

12. Barlow JH, Turner AP, Wright CC. A randomized controlled study of the Arthritis Self-Management Programme in the UK. Health Educ Res 2000;15:665-680.

13. Arthur HM, Daniels C, McKelvie R, Hirsh J, Rush B. Effect of a preoperative intervention on preoperative and postoperative outcomes in low-risk patients awaiting elective coronary artery bypass graft surgery. A randomized, controlled trial. Ann Intern Med 2000;133:253-262.

14. Robinson JL, Nash DB. Consumers' role in patient safety. QRC Advis 2000;17:1-3.

15. Patient Fact Sheet. 20 Tips to Help Prevent Medical Errors (AHRQ Publication No. 00-PO38) Agency for Healthcare Research and Quality. Available at: Accessed June 25, 2001.

16. DoctorQuality corporate Web site, Inc. Available at: Accessed June 25, 2001.

17. Lerner P, Lerner J. Lerner's consumer guide to health care: how to get the best health care for less. Seattle, WA: Lerner Communications; 2001.

18. Arnot RB. The Best Medicine: How to Choose the Top Doctors, the Top Hospitals, and the Top Treatments. Reading, MA: Addison-Wesley Publishing Company;1993.

19. Fotch E. The effect of the world wide web on you and your patients. Ophthalmol Clin North Am 2000;13:261-269.

20. Bard M. How will the web affect the physician-patient relationship? Interview by Marilynn Larkin. Lancet 2000;356:1777.

21. Wilkes MS, Bell RA, Kravitz RL. Direct-to-consumer prescription drug advertising: trends, impact, and implications. Health Aff (Millwood) 2000;19:110-128.

22. Brown AB. The direct-to-consumer advertising dilemma. Patient Care 2001;35:22-33.

23. Holt GA, Dorcheus L, Hall EL, Beck D, Ellis E, Hough J. Patient interpretation of label instructions. Am Pharm 1992;NS32:58-62.

24. Fletcher RH. Patient compliance with therapeutic advice: a modern view. Mt Sinai J Med 1989;56:453-458.

25. Woloshin S, Bickell NA, Schwartz LM, Gany F, Welch HG. Language barriers in medicine in the United States. JAMA 1995;273:724-728.

26. Williams MV, Parker RM, Baker DW, Parikh NS, Pitkin K, Coates WC, et al. Inadequate functional health literacy among patients at two public hospitals. JAMA 1995;274:1677-1682.

27. Gazmararian JA, Baker DW, Williams MV, Parker RM, Scott TL, Green DC, et al. Health literacy among Medicare enrollees in a managed care organization. JAMA 1999;281:545-551.

28. Medication safety issue brief. Asking consumers for help. Part 3. Hosp Health Netw 2001;75:suppl 2 p. following 56.

29. Patient Confidentiality American Medical Association. Available at: Accessed June 25, 2001.

30. Grange A, Renvoize E, Pinder J. Patients' rights to access their healthcare records. Nurs Stand 1998;13:41-42.

31. Nash DB, Manfredi MP, Bozarth B, Howell S. Connecting with the new healthcare consumer. Gaithersburg, MD: Aspen Publishers, Inc.; 2001.

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Page last reviewed July 2001
Internet Citation: Chapter 50. Other Practices Related to Patient Participation. July 2001. Agency for Healthcare Research and Quality, Rockville, MD.