Clearing the Error: Patient Participation in Reducing Diagnostic Error
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The Jefferson Center, in collaboration with Syracuse University and the Society to Improve Diagnosis in Medicine, is conducting a two-year initiative to assess public deliberation's value in healthcare policy, particularly in defining patient roles in improving diagnostic quality. By engaging diverse groups in public deliberation, they identify actionable strategies to address diagnostic errors and the obstacles patients face in the diagnostic process. The initiative’s findings emphasize the importance of patient involvement in healthcare, demonstrating that educated and activated patients can significantly enhance diagnosis and health outcomes.
Clearing the Error: Patient Participation in Reducing Diagnostic Error
- 1. CLEARING THE ERROR Using Public Deliberation to Define Patient Roles as Partners in the Diagnostic Process The Jefferson Center, Dr. Tina Nabatchi at Syracuse University’s Maxwell School of Citizenship and Public Affairs, and the Society to Improve Diagnosis in Medicine are leading a 2 year research initiative to assess the value of public deliberation in developing healthcare policy and to identify roles patients are willing and able to perform to improve diagnostic quality. This effort is funded by the Agency for Healthcare Research and Quality.
- 2. ACTIVATING PATIENTS IN POLICY In an effort to improve health outcomes, providers, insurers, and others are working to more fully engage patients in their own healthcare. These initial efforts suggest educating patients about their condition(s) and involving patients in determining the nature and course of their treatment can improve health and reduce spending. Building from the insight that, with a little assistance and education, patients can make effective decisions about their own care, we’re exploring the value of incorporating patient knowledge and diversity into the development of health policy, regulations, and institutional practices. We chose first to focus on the issue of diagnostic error. We know the relationship between the patient and their provider is a critical determinant in effective diagnosis. Unfortunately, many patients feel unable to fully assert themselves as mutual partners in the patient-provider relationship. To generate new, patient-centered insight into this problem, we convened diverse groups in public deliberation to recommend and evaluate actions that patients and/or their advocates would be willing and able to perform to improve diagnostic quality. Participants also identified obstacles to action that healthcare systems and providers should address to improve diagnosis. This report highlights those recommendations and assesses the value of public deliberation in developing more effective health policy. IMPROVINGDIAGNOSIS What’s diagnostic error? A diagnostic error is a missed, delayed, or wrong diagnosis. An error is made in about 1 of every 10 diagnoses. Diagnostic error is a leading cause of malpractice claims and likely a significant factor in adverse health events. Diagnostic error, however, is less responsive to system-level change than other types of medical error, which has held up the search for solutions.
- 3. PATIENT-DRIVEN POLICY Our engagement efforts consisted of Citizens’ Jury-style public deliberation. 20 individuals were selected to participate for six days of deliberation over two weekends in late 2015. Applicants were recruited from Onondaga County, New York. The demographic composition of the selected panel is included in Appendix A. Participants met for appoximately 50 hours to hear expert testimony and feedback (expert list is in Appendix B), share their personal stories and expertise, and deliberate together to recommend patient action steps. They identified five main strategies for addressing diagnostic error through patient action. 1. Present symptoms clearly and completely 2. Assert yourself in the relationship 3. Coordinate your care 4. Ensure accurate records and tests 5. Manage your care The group also recommended sixteen concrete action steps to support implementation of the main strategies. All sixteen action steps are listed in Appendix C. To maximize the opportunity for patients and their advocates to succeed using these recommendations, participants were asked to think about potential obstacles to pursuing the recommended actions and identify strategies for health systems to begin addressing those obstacles. The identified obstacles and top remedies are outlined in Appendix D. Participants recommended concrete, sound action to address the challenge of diagnostic error. Their input complements the recent work of the Institute of Medicine and other organizations by presenting a clear patient perspective that responds to the diversity of patient experience. What’s a Citizens’ Jury? A Citizens’ Jury provides everyday citizens the opportunity to study an issue deeply, deliberate together with a diverse group of their peers, and develop solutions to challenging public issues. A Citizens’ Jury includes: • A random stratified sample of a given community • Unbiased information provided by a diverse array of experts • Time to study and discuss an issue in depth • Recommendations produced through deliberation and voting
- 4. THE RESEARCH PROCESS To assess the value of patient deliberation in developing patient and system-focused healthcare policy and to evaluate the efficacy of the recommended action steps, we conducted controlled research. The research process is described in the graphic below. Two matched panels of 20, randomly selected and stratified to reflect the demographics of Onondaga County, were convened to recommed action steps for patients to reduce errors in diagnosis. Each group heard educational presentations from experts on diagnosis and diagnostic error. GROUPA GROUPB Group B completed questionnaires with their individual recommendations for patient action immediately after the presentations. Group A questioned experts and deliberated for 6 days to develop group recommendations for patient action. GROUPC A third group of 93 diverse participants, Group C, was convened to assess the feasibility and impact of Group A’s recommendations from the perspective(s) of patients and healthcare consumers who didn’t hear extensive educational presentations. All 3 groups were surveyed before and after their participation to assess changes in patient activation, trust in doctors, perceptions about diagnostic error, knowledge of diagnostic error, perceptions of patient efficacy and patient responsibilities, and overall health literacy. A control group was also surveyed to provide baseline data relative to the other groups.
- 5. RESEARCH RESULTS Groups A, B, and C experienced statistically significant increases in patient activation, trust in doctors, and perceptions about the seriousness of diagnostic error. The percentage of participants who correctly answered a question measuring their knowledge about diagnostic error increased in all three groups. All three groups saw changes in their perceptions about patient engagement. After participation, each group had a statistically significant change in their perceptions about responsibility for diagnostic error and the role of patients in the diagnostic process. Group A, the 6-day deliberation group, also experienced statistically significant increases in correctly answering questions about health literacy after deliberation. For all questions, effect sizes were largest among Group A, suggesting that longer-term engagement, coupled with deliberation, promotes greater patient knowledge, activation, and perceptions of self-efficacy. Moderate or Major Improvements in Diagnostic Quality Easy or Very Easy to Use in Own Healthcare Likely or Very Likely to Use in Own Healthcare Coordinate your care Ensure accurate records and tests Assert yourself in the relationship Manage your care Present symptoms clearly and completely 0% 10% 40% 50% 60% 70% 80% 90%20% 30% 100% Groups C also evaluated Group A’s recommendations for impact on diagnostic error, ease of use, and likelihood of use. Strong majorities thought all recommendations would likely lead to moderate or major improvements in diagnostic quality. Participants felt recommendations 1, 2, and 5 would be the easiest to implement in the course of their own care. Similarly, participants said they were most likely to use recommendations 1, 2, and 5 in the course of their own care. GROUP C’S ASSESSMENT OF PATIENT RECOMMENDATIONS
- 6. CONCLUSIONS AND NEXT STEPS The work accomplished by patients and healthcare consumers during Clearing the Error highlights the capacity of non-experts to participate meaningfully and productively in assessing and improving healthcare policy. The recommendations to improve diagnostic quality are on par, and in many ways more detailed, than available recommendations from the National Academy of Medicine and others. Clearing the Error also provides a foundation for further research to explore the role of patients in improving diagnostic quality and in developing health policy. Over the next 18 months, we will explore the efficacy of patient recommendations in clinical settings, focusing first on the top 3 recommendations as assessed by Group C. We also hope to test the relative efficacy of recommendations generated by patients and doctors. For example, are patients more or less likely to follow similar recommendations if they come from other patients? If you are interested in learning more about research to implement and evaluate patient recommendations, or if you’d like to use these recommendations in your own research, let us know! You can reach us at arockway@jefferson-center.org or 651-209-7672. If you’d like additional materials from this research not included in this report, contact Dr. Tina Nabatchi at tnabatch@maxwell.syr.edu.
- 7. CLEARING THE ERROR Clearing the Error is a collaborative effort between the Jefferson Center, the Maxwell School of Citizenship and Public Affairs at Syracuse University, and the Society to Improve Diagnosis in Medicine, with funding from the Agency for Healthcare Research and Quality. The Jefferson Center is a nonpartisan nonprofit that engages Americans directly to solve shared challenges and craft better policy. Our mission is to strengthen democracy by advancing informed, citizen-developed solutions to challenging public issues. Contact: Andrew Rockway arockway@jefferson-center.org jefferson-center.org The Maxwell School of Citizenship and Public Affairs is Syracuse University’s home for innovative, interdisciplinary teaching and research in the social sciences, public policy, public administration, and international relations. Contact: Dr. Tina Nabatchi tnabatch@maxwell.syr.edu maxwell.syr.edu Contact: Paul Epner Paul.Epner@improvediagnosis.org improvediagnosis.org The Society to Improve Diagnosis in Medicine works to improve diagnostic quality through research, education, and advocacy. SIDM is committed to a world where diagnosis is accurate, timely, and efficient.
- 8. Demographic Onondaga County % Actual Number Gender Female 51.9% 9 Male 48.1% 11 Ethnicity Asian 3.1% 0 Black 11.0% 5 Hispanic or Latino 4.0% 1 Native American or Alaska Native 0.8% 0 Native Hawaiian or Pacific Islander 0.0% 0 White 81.1% 14 Household Location Urban 87.41% 18 Rural 12.59% 2 Party Affiliation Democrat 36.96% 7 Independent, Unaffiliated, Other 32.77% 6 Republican 30.27% 7 Annual Household Income Less than $15,000 13.3% 3 $15,000-$24,999 10.5% 3 $25,000-$34,999 10.0% 6 $35,000-$49,999 12.7% 2 $50,000-$74,999 18.7% 4 $75,000-$99,999 12.4% 2 $100,000+ 22.5% 0 Age 18-34 31% 7 35-64 50% 9 65 & over 19% 4 Education Did not complete High School 10.1% 2 High School or Equivalent 45% 8 Associate’s/Bachelor’s degree 30.4% 8 Graduate or professional degree 14.5% 2 Total Number of Participants 20 APPENDIX A - DELIBERATIVE PANEL DEMOGRAPHICS
- 9. APPENDIX B - EXPERT PRESENTERS Viraj Bhise Graduate Research Assistant, University of Texas Health Science Center at Houston Chief Operating Officer, Health Connect Compusoft Dr. Janice Colestro Associate Director, Veterans Health Administration Office of Medical-Legal Affairs Dr. Laurie C. Drill-Mellum Chief Medical Officer, MMIC Dr. John Ely Physician and Professor of Family Medicine at University of Iowa Paul Epner Executive Vice President, Society to Improve Diagnosis in Medicine Helen Haskell President, Mothers Against Medical Error Dr. Stephen Martin Faculty, Harvard Medical School Assistant Professor, University of Massachusetts Medical School Kathryn McDonald Executive Director, Center for Health Policy and Center for Primary Care and Outcomes Research at Stanford University Patricia McGaffigan Chief Operating Officer and Senior VP of Programs, National Patient Safety Foundation Dr. David Meyers Emergency Physician, Sinai Hospital Sue Sheridan Director of Patient Engagement, Patient-Centered Outcomes Research Institute Dr. Joan Von Feldt Professor of Medicine, University of Pennsylvania Hospital Peggy Zuckerman Board Member, Society for Participatory Medicine
- 10. APPENDIX C - PATIENT RECOMMENDATIONS FOR ACTION 1) Present symptoms clearly and completely • Be truthful about your symptoms and other behaviors when telling your doctor about your history to ensure information is accurate. • Be prepared to discuss your symptoms. For example, 8 characteristics of symptoms are quantity, quality, aggravating factors, alleviating factors, setting, associated symptoms, location, timing. 2) Assert yourself in the relationship • Be clear, concise, and persistent in communicating your symptoms and concerns. • Ask detailed questions of your doctor, including a plan to arrive at a diagnosis so the doctor remains engaged and focused on your concerns. For example, “could these symptoms indicate something else or an additional issue?” • Notify your healthcare provider if your condition worsens, does or doesn’t improve, or if new symptoms develop. • If you’re concerned about the accuracy of the diagnosis, seek a second opinion. 3) Coordinate your care • Find a primary care provider/family doctor so that they can better coordinate and manage your healthcare. • Enlist a patient advocate, as needed, to assist you in coordinating care. • Have your primary care provider manage all your records to ensure they are accessible to other providers. • Seek out a health system where different doctors work together frequently, share consistent information, and coordinate services effectively. 4) Ensure accurate records and tests • Maintain and update your own medical record, which includes test results, doctor notes, images, communication with providers, and other information pertinent to your medical history. • If you have access to your electronic medical records or a patient portal, use that. If you don’t have access, ask for a physical copy of your records and/or any recent updates. • If you notice a factual inaccuracy with your medical record, advocate and insist to have the error corrected. 5) Manage your care • Ensure communications and expectations are clear between you and your healthcare provider. • Throughout the relationship, follow through on your health care provider’s recommendations regarding the course of action to reach an accurate diagnosis. For example, completing lab tests, going to appointments with specialists, and taking medications as prescribed. • Follow up with your healthcare provider after appointments to obtain test results to ensure proper testing was conducted. Thus, both patient and healthcare provider are accountable.
- 11. APPENDIX D - SYSTEM OBSTACLES AND SOLUTIONS Different payment systems, insurance, and/or ability to pay can limit choice and access or influence the course of diagnosis and treatment. • Provide patients with clear, practical information about signing up for insurance coverage • Develop standardized pricing for medical services • Ombudsman/liaison/advocate to help patient navigate choice when managing cost vs. care Fragmented, decentralized healthcare systems inhibit effective communication and information-sharing across systems and between providers. This fragmentation can also reduce provider collegiality/ collaborative problem solving. • Transition from many proprietary electronic health record systems to one system so there is greater interoperability across providers • Primary care provider should be responsible for coordinating communication between all different providers • Patients go to portal to review or verify records; if they don’t have a computer, review notes before they leave the office • Develop protocols for sharing information between providers Patients don’t know how to communicate symptoms effectively. • Develop a video, poster, or handout for appointment settings, to include potential questions for your doctor, topics to cover, and other information so patients can “help doctors help you” • Have a Kiosk or iPad at clinic/office that presents interactive questions to help patients clarify 8 characteristics of their symptoms The complexity of the healthcare system makes it difficult for patients to help coordinate the diagnostic process (e.g. following up with multiple doctors, tracking personal medical record and history, making sure test results are analyzed). • Access to patient portal in office, with opportunity to print records, notes, treatment plan, test results, and other information • Create a Patient Review Board for missed diagnosis to review implementation of practices aimed at improving diagnostic quality • A flag/notification on electronic health record when new information is added and when primary care provider has read it
- 12. APPENDIX D - SYSTEM OBSTACLES AND SOLUTIONS Culture encourages doctors to be efficient and productive; patients have limited time to interact with doctors face-to-face. • Doctor has another staff person write electronic medical record and perform other tasks to allow more time for interaction with patient • Shift culture of 15 minute appointments to 20 minutes; 5 minutes makes a difference • Doctor has patient information (8 characteristics of symptoms or etc.) before appointment begins • Change payment structure to encourage longer visits or at least focus on better health outcomes; payment structure reflects "success rate" - such as better health outcomes, fewer follow-up visits, etc. • Have provider address most important issue first Patients don't necessarily know what their options might be for asserting themselves. System Focus • Mandatory debriefing between provider and patient to ensure clarity of next steps during visit • Change provider reimbursement system to incentivize/allow more time with patients Patient Focus • Provide a handout or verbal instructions to patients that describe patient “rights” - to ask questions; to ask for a 2nd opinion; to receive satisfactory answers to questions; to receive a summary of what's going on with your care • Be persistent, be a pain in the ass Patients don't necessarily trust providers. Provider attitudes or behavior can inhibit patient openness, receptivity, confidence, and/or satisfaction. • Doctor communicates uncertainty in the diagnosis appropriately. For example, "I don't know what's wrong with you" vs. "I'm not sure what's wrong with you, I have a few ideas, but Tests X and Y will help me make a more accurate diagnosis." • Have an assistant type into electronic health record during encounter so that doctor can focus on patient conversation • Ongoing education for providers about interacting and communicating with patients