Patient Recommendations to Improve Diagnostic Quality

A Note from the Jury

Diagnostic error occurs when a diagnosis is wrong, missed, or avoidably delayed. It occurs in approximately 10% of diagnoses. Diagnosis involves a complex and dynamic continuum involving patient, family, doctors, clinicians, other healthcare professionals, receptionists, and insurers.

There are numerous factors that could lead to a patient being improperly diagnosed with a medical condition. Both doctors and patients are responsible for ensuring a timely and accurate diagnosis. Clear, consistent communication and patient persistence are instrumental in ensuring diagnostic quality.

This information was compiled through a series of discussions with patients, healthcare professionals, patient advocates, and research professionals.

Patient Recommendations for Reducing Diagnostic Error

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, the 8 characteristics of symptoms are quantity, quality, aggravating factors, alleviating factors, setting, associated symptoms, location, and timing). Here’s an example description:

  Physician: What brings you in to see us?

  Patient: Well, I’ve been having these headaches for the past couple of months. I never used to get headaches, but for the past couple of months, I get one every two or three days, usually in the late afternoon or early evening, and they last a couple of hours. The first time, I was driving home from work. They’re mostly in the front and in both temples and they’ve been getting worse. It feels like a tight band around my head and I’d say it’s about a 5 or 6 on a scale of 10 in terms of severity. Lying down seems to help and Tylenol helps a little but doesn’t make them go away completely. They’re usually worse after a stressful day, but they can come on a normal day too. Bending over also makes them worse. I haven’t noticed anything else like a fever or vomiting or anything.

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.
  • The treatment plan could change based on new information and potentially a new diagnosis.
  • Potential new urgency could affect the healthcare provider’s level of attention.
• If you’re concerned about the accuracy of the diagnosis, seek a second opinion.

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.

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.

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, 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.

Obstacles & Solutions

We’ve identified obstacles that can reduce the effectiveness of the above recommendations. Beneath each obstacle are suggested solutions to limit their negative impact. The obstacles and solutions are ranked according to their significance.

Different payment systems / insurance / 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
• Standardize pricing for medical services
• Adopt ombudsman/liaison/advocate to help patient navigate choice, managing cost vs. care
• Doctors and nurses don’t know what kind of insurance a patient has; only the billing department knows the insurance
• Provide incentives so doctors accept all forms of insurance
• Mandate generic drugs (where available)
• Doctor can waive certain charges
• Sliding scale charge for certain procedures

Fragmented, decentralized healthcare systems inhibit effective communication and information-sharing across systems and between providers. This fragmentation can also reduce provider collegiality and collaborative problem solving.

• Transition from many proprietary Electronic Health Records 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 have permission to opt-in to include information in database; opt-in to share information with other providers
• Insurers should provide incentives for primary care provision (so everyone has a primary care provider)
• Develop standards for doctor communication in different situations
• More frequent telephone calls (direct interaction) between doctors to discuss diagnoses
• Provide patients with SD cards to bring to appointments (includes medical records); update after each appointment
• Convene meetings within healthcare settings or require continuing education opportunities related to improving communications between providers, across networks

Patients don’t know how to communicate symptoms effectively.

• Video/poster/flyer in office/clinic/healthcare setting outlining potential questions for your doctor, potential information to cover –> “Help your doctor help you” with examples
• Kiosk/iPad at clinic/office at check-in that presents interactive/animated questions to address 8 characteristics of symptoms
• Questionnaire before appointment (when you make appointment) asking about 8 characteristics of symptoms
• Patient questionnaire following appointments to reflect on interaction – did you forget to say something to your doctor, etc.?
• Incorporate how to choose doctor/how to communicate symptoms/how to have productive appointment into ongoing health education (middle school, high school, college, senior/community education, etc.)
• Mass media PSAs; informational flyers in SS, IRS, Medicare communications to reach more people; clear, accessible language
• Appointment scheduler could triage to help patient prioritize comments to doctor
• Website that guides patients in what questions they should ask their doctor
• Coaching/guidance to help patients present information clearly and coherently

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, etc.)

• Access to patient portal in office, with opportunity to print records, notes, treatment plan, test results, and other information
• 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
• All patients have access to a trained, educated advocate (independent from immediate health system/provider); provided by insurer, state, health system
• Checking test results leads to automatic conversation between patient and doctor/primary care provider
• Designated personnel to walk through patient portal/patient records, if needed
• Educate doctors and patients about sharing records with patients
• Nationwide source (call center/website) where advocates can answer questions or offer other resources
• Health system identifies family member or other advocate/proxy on behalf of patient, if patient is unable

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 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, fewer follow-up visits.
• Have provider address most important issue first
• Nurse line or similar where patients can consult with a medical professional to plan appointment, think about what needs to be said during appointment
• Remove clocks/watches from doctor’s view during appointments
• Don’t talk to doctor when they’re taking notes/on the computer
• Video loop in waiting room/before appointment about what to expect during appointment
• Provide incentives to increase number of doctors

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; compensate/reimburse doctors for collaborating and communicating results/treatments/etc.
• Health systems need to educate patients so they can advocate for themselves – education about what patients should expect – begin education early (like in elementary school); this is a critical life skill
• The system initiates the questioning process (what else could it be/what did we miss?); require review of symptoms, history
• Have someone in the system to represent the patient voice as an advocate (case manager/navigator)
• Infomercials and ads that help patients know/understand what their rights are and what they can do to communicate effectively
• National or global department where errors are reported, analyzed, and disseminated – NTSB for diagnostic error.
• Analysis of errors without sanctions so systems and doctors can learn from their mistakes
• The insurers require and pay for multiple opinions about diagnosis

Patient Focus

• Give a letter/brochure/verbal instructions to patients that describe patient rights – to ask questions; 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
• Patient has clear expectations for the interaction with provider
• Patient writes down their concerns and shares with doctor or nurse before appointment
• Build and provide a website and advertise to help people know their rights and to address questions about care
• Patients need confidence to challenge the system
• To advocate for yourself, write governor, congressperson, or others in power

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 have a clue 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
• The doctor, office setting should ease patient stress; staff should set a tone of caring for the patient during office visits
• Make statistics about doctors publicly available ex. success rates of cardiologist, malpractice suit data, official reprimands, and so on
• Provider periodically allows patient to evaluate the provider (via email or mail or…)
• Have information about provider available in the waiting room so patient has a sense of/introduction to provider
• Doctor should always introduce themselves
• Doctor hosts informal “get to know me” to build relationship with patients