Patient and Family Engagement to Prevent Diagnostic Error Martine Ehrenclou, MA Award-Winning Author, Healthcare Advocate Tejal Gandhi, MD MPH CPPS President National Patient Safety Foundation Kathryn McDonald, MM Senior Scholar & Executive Director Center for Health Policy/Center for Primary Care and Outcomes Research Stanford University PATIENT SAFETY AWARENESS WEEK DIAGNOSTIC ERROR WEBCAST SERIES
Patient Involvement in Diagnostic Error Prevention Kathryn McDonald, MM Senior Scholar & Executive Director Center for Health Policy/Center for Primary Care and Outcomes Research Stanford University Presentation inspired by work with Society for Improving Diagnosis in Medicine Patient Engagement Committee, and the many patients and families who have spoken at annual Diagnostic Errors in Medicine conferences about the problems they have encountered and solutions they want SOON.
The diagnostic journey maze Role of reasoning Cognitive biases Uncertainty Working diagnosis Feedback dynamics Time and people Professional roles Patient inexperience 3
What is diagnostic error from patient/family perspective? Many stories Read Patient Narratives on www.npsf.org/psaw Many different types All settings prone Diagnosis happens throughout care Medications Complications Varying severity of consequences (physical AND emotional) 4
Patient perceptions of mistakes in ambulatory care setting Percentages of respondents who perceived harm from diagnostic mistakes (n=218) and treatment mistakes (n=208) Kistler et al, Arch Intern Med 2010 5
Patient and family involvement Beneficial effects generally noted Few studies of patient-targeted interventions during diagnosis to reduce dx error Facilitating mechanisms? Example: patient has a diagnostic journey roadmap More patient involvement in diagnostic search? Leads to More diagnostic accuracy Inhibiting mechanisms? Example: patient discouraged from role in diagnosis Less patient involvement in diagnostic search? Leads to More diagnostic errors and delays 6
Common challenges patients/families have experienced Fear complaining, being seen as difficult Feel powerless for many reasons (sick, scared, social status) Do not always take own problems seriously enough Are unsure about basics of the health system or involvement opportunities Have difficulty dealing with inexperienced doctors who are trying to appear experienced in the problem Are unsure how to get the supervisor when issues are not resolved at frontline 7
Health professionals and doctors sometimes Dismiss patients complaints and knowledge Do not listen to concerns about serious symptoms or deteriorations Give psychiatric, alcoholic or drug abuse diagnoses incorrectly during undiagnosed phase 8
Health systems sometimes exhibit Disjointed care: Lack of coordination and teamwork Breakdown in communication Lack of information passed along to patient Test results not reviewed closely or followed up No disclosure or apology after diagnostic errors 9
Aerial view of patient involvement* to mitigate diagnostic error Three leverage points 1. Patient-doctor encounter 2. Patient-delivery system 3. Patient-policy & research community Policy Organization Professional *To the extent desired and feasible for the patient and their informal caregivers. 10
LEVEL 3 Improving research and policy regarding diagnostic safety: sample national targets that dovetail Patient-centered medical home Personal health records Patient-centered outcomes research institute Care coordination/ navigation/ white spaces Diagnosis as a team sport? 11
LEVEL 2 Patient leverage for improving diagnostic delivery system Reporting diagnostic errors Getting involved in delivery system Acting as a safety net 12
LEVEL 1 What can patients do today to improve diagnosis & how can healthcare organizations support them? Think about what you can do as you listen to the next talk from Martine Ehrenclou, author of The Take Charge Patient. 13
Drop Us a Line! Please share any examples you had in mind when you answered the earlier poll question about something you have done to facilitate involvement in preventing diagnostic errors. The examples can relate to any of the three levels for involvement in diagnostic error mitigation: Level 1 (doctor/professional encounter) Level 2 (delivery system/organization) Level 3 (policy and research). Please email us your responses to: Kathy.Mcdonald@stanford.edu 14
Patient and Provider Involvement to Improve Diagnosis Martine Ehrenclou, MA Award-Winning Author, Healthcare Advocate
What is patient/family engagement? Active participant in care Prepares for encounter Shared decision-making Patient well-informed and empowered Provider welcomes participation 16
Why patient/family engagement? To improve outcomes Increase quality of care Reduce medical errors Improve communication/patient understanding Create a successful provider-patient relationship (HRSA, BMJ) 17
Where do patients begin? 18
The Patient s Toolkit 19
List of questions 20
Top three medical concerns 21
List of medications 22
Keep track of symptoms 23
Keep track of symptoms Symptom diary What makes symptoms worse/better Time of day When started Share with provider 24
Medical history List major medical events, surgeries and procedures List major illnesses/conditions Family medical history 25
Medical records 26
Patient s research Become well informed about your illness/medical condition Research credible websites.edu,.org,.gov Get second opinions from qualified specialists 27
What can providers do? Encourage patient/family participation Encourage questions Encourage shared decision-making Encourage partnership Provide information 28
Provide patients with: Copies of their health information (e.g., test results, patient visit summaries, info on diagnosis) Electronic access to health information Copy of discharge instructions Send reminders to patients for preventive / follow-up care 29
Communication skills Medical providers set the stage for interaction Use simple and clear language Allow patient to tell story, without interruption, for 90 seconds Avoid interruption before patient has completed important points Implement active listening to clarify patient s concerns - Archives of Internal Medicine 30
Communication skills for medical providers Use drawings, images and models to illustrate your points Clarify patient s understanding of information provided Provide detailed, written instructions Use Teach-Back Method 31
Effective communication = Improved outcomes (BMJ) Builds trust Improves disclosure Facilitates comprehension Reduces risk of medical errors 32
The Patient s Toolkit for Diagnosis 33
The Patient s Toolkit for Diagnosis Prepare for my appointment 34
The Patient s Toolkit for Diagnosis My symptoms or pain 35
The Patient s Toolkit for Diagnosis My medicines 36
The Patient s Toolkit for Diagnosis After my doctor visit: What s next? 37
Drop Us a Line! We are interested in your feedback on the Patient s Toolkit for Diagnosis so that we can continue to improve this resource. Please send your comments to: PatientToolkit@improvediagnosis.org 38
References Adler, Herbert M. "The Sociophysiology of Caring in the Doctor-patient Reationship." Journal of General Internal Medicine 17.11 (2002): 883-90. Print. Bernstein, Maurice. "Better Communication Leads to Better Care." Interview by Doug Capra. American Medical News 31 Jan. 2011. Web. http://http://www.amaassn.org/amednews/2011/01/31/prca0131.htm. Coulter, Angela. Effectivness of strategies for informing, educating, and involving patients. British Medical Journal, July 7, 2007 Ehrenclou, Martine, The Take-Charge Patient, Lemon Grove Press, 2012 Fong Ha, Jennifer, Nancy Longnecker, and Hons Dip Surg Anat. "Doctor-Patient Communication: A Review." The Ochsner Journal 10.1 (2010): 38-43. Print. Guadagnino, Christopher. "Practicing Patient-centered Collaborative Care." Physician's News Digest Nov. 2006. Print. Kerse, Ngaire, Stephen Buetow, Arch G. Mainous III, Gregory Young, Gregor Coster, and Bruce Arroll. "Physician-Patient Relationship and Medication Compliance: A Primary Care Investigation." The Annals of Family Medicine 2.5 (2004): 455-61. Print. Kessels, Roy P. C. "Patients' Memory for Medical Information." Journal of the Royal Society of Medicine 96.5 (2003): 219-22. Print. Kravitz, Richard. "Patient Satisfaction with Health Care." Journal of General Internal Medicine 13.4 (1998): 280-82. Print. Maguire, Peter. "Key Communication Skills and How to Acquire Them." British Medical Journal 325.7366 (2002): 697-700. Print. McDonald, Kathryn M., Bryce, Cindy L., Graber, Mark L. The patient is in: patient involvement strategies for diagnostic error mitigation. BMJ, http://qualitysafety.bmj.com/content/22/suppl_2/ii33.abstract National Patient Safety Foundation, tools and resources for patients and consumers, http://www.npsf.org/for-patients-consumers/tools-and-resources-for-patients-andconsumers/ Roett, Michelle A,. "Help Your Patient "get" What You Just Said: A Health Literacy Guide." The Journal of Family Practice 61.4 (2012): 190-96. Print. 39
Questions? 40
Free Diagnostic Error Tools Available Visit www.npsf.org/psaw to download free tools and resources for: Patients and Families Health Care Clinicians and Professionals Health Care Organizations 41
Coming Soon! Safety Is Personal: Partnering with Patients and Families for the Safest Care A new report from NPSF s Lucian Leape Institute Roundtable on Consumer Engagement Will Be Available for Download at http://www.npsf.org/llisafety-is-personal/ 42
Please Join Us! Wednesday, March 12 2:00 3:00 pm ET Diagnostic Safety in an EHR-enabled Health Care System Wednesday, March 26 2:00 3:00 pm ET How to Do a Root Cause Analysis of Diagnostic Error Learn more and register at www.npsf.org/psaw. PATIENT SAFETY AWARENESS WEEK DIAGNOSTIC ERROR WEBCAST SERIES
The Patient Safety Awareness Week Diagnostic Error Webcast Series has been made possible thanks to the generous sponsorship of the Cautious Patient Foundation.