Pa Patient Saf Advis 2018 Oct 31;15(Suppl 1):39-45.
The Star of the Diagnostic Journey: Assessing Patient Perspectives
Anesthesiology, Cardiology, Critical Care, Emergency Medicine, Nursing, Oncology, Pathology
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Author

Kelly Gipson, BSN, RN, CPPS
Project Manager
Pennsylvania Patient Safety Authority

Abstract​

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Delayed or incorrect diagnosis is a commonly identified medical error, and awareness of this issue has increased. Improving diagnosis is a pillar of the strategic plan for the Pennsylvania Patient Safety Authority. Insight into how Pennsylvania residents want to be engaged during the diagnostic process was obtained during a recent telephone survey. Survey results indicate that 42.3% of 606 adult respondents always call their doctor when a medical test is ordered but no one has called them with results. It also showed that in-person communication to receive a diagnosis was preferred by 87.7% and potentially important information was withheld by 7.1% of respondents. Education and communication related to the diagnostic process are essential and can be facilitated through engagement. Although a partnership with patients and families is critical, healthcare professionals should be aware that not everyone may want to assume an active role in this process. The needs of every patient may be different; still, healthcare professionals should view the patient and family as a focal point in the journey to diagnosis.

Introduction

The diagnostic process includes communication of the health problem to the patient.1 Traditionally, patients have received diagnostic communication during face-to-face visits with their doctor. With transformations in healthcare delivery, many new and different options are available for receiving a diagnosis. From specialty care to walk-in clinics and from patient portals to telemedicine, convenience and access are priorities for patients today.

In a survey, healthcare consumers across the nation identified diagnostic error as one of the most common medical errors.2 To help understand the impact in Pennsylvania and inform the work to improve diagnosis, the Pennsylvania Patient Safety Authority ("the Authority") sought input from Pennsylvania residents to understand how patients envision their role in the diagnostic process through questions related to use of basic self-advocacy, preference about how a diagnosis is received, and transparency of information during the diagnostic process.

Methods

The Authority sponsored questions in a spring 2018 consumer survey by the Center for Survey Research, Penn State Harrisburg. The survey was administered via telephone from February 19, 2018, through April 19, 2018, to adult Pennsylvania residents. 

The consumer survey methodology is described in the September 2018 Pennsylvania Patient Safety Advisory article, "Speaking Up for Safety—It's Not Simple." The following questions were included to inquire about the patient perspective and participation related to the diagnostic process.

  • How often do you call your doctor when you have a medical test ordered, but no one calls you with the results?
    • Respondents could choose from the options of Always, Often, Sometimes, or Never. Some individuals did not respond and said the question does not apply to them, they do not know, or they declined to answer.
    • They were then asked an open-ended question: Why do you [always/often/sometimes/ never] call your doctor when you have a medical test ordered but no one calls you with the results?
  • When dealing with an illness or new health problem, how would you prefer to receive your diagnosis? The following options were provided:
    • In-person discussion with my physician
    • Communicating with a physician or medical professional over video call such as Skype, Face Time, or Teledoc
    • Technology that does not require direct interaction with a medical professional such as a smartphone app or mail-order testing kit
    • Visiting the closest walk-in or express clinic or urgent care

Some individuals did not respond to the question and said they do not know or they declined to answer.

  • Have you ever withheld information from a doctor, nurse, or other healthcare worker that could have been important? The available responses were Yes or No. Some individuals did not respond to the question and said they do not know or they declined to answer.

Results

Demographics

Responses were obtained from 606 Pennsylvania residents; 51.6% of participants were female. The respondents' ages were as follows:

  • 107 (17.7%) were 18 to 34 years of age
  • 301 (49.7%) were 35 through 64
  • 198 (32.7%) were age 65 or older  

To ensure that results were not biased toward any demographic group and to prevent over- or underrepresentation, the results were checked against two known demographic characteristics of the population. The weights were applied to give each case a value that was representative of the known percentage in the population. The weighted value better represents the population in age and sex to ensure equal representation but may not total 100%.

When No One Calls with Results

Of the total respondents, 42.3% of the weighted response set (n = 606) reported that they always call their doctor when a medical test is ordered but no one has called them with results. See Figure 1.

Figure 1. How Often Do You Call Your Doctor When You Have a Medical Test Ordered, but No One Calls You With Results?

When asked why, respondents gave narrative answers. Respondents who said that they always call the doctor gave response themes such as entitlement, concern, curiosity, importance of information sought, and error prevention. Their responses show a sense of self-empowerment. Imagine the thought process of the individual who stated to the surveyor, "I am the star."

Other quotes received are listed here:

  • "Results affect me."
  • "I care about my health."
  • "I need to know."
  • "I have a right to know and make my own decision on my healthcare."
  • "I deserve to know my results. If you don't call me I want to know why."
  • "I know doctors are busy, but we have to own our healthcare, and we have to look out for ourselves."

A smaller number of respondents, 12.0% of the weighted response set (n = 606), reported that they never call their doctor when a medical test is ordered but no one has called them with results. Dichotomous responses were received from this group and ranged from a sense of empowerment to passiveness. A portion of the responses referenced use of patient portals, emails, and online access.

Other responses were more passive or suggested minimal patient involvement. This was evident in comments that referred to an assumption that a lack of contact from the medical team indicated a negative result, the opinion that it is the responsibility of healthcare professionals to communicate results, a willingness to wait for disclosure of results at a follow-up appointment, and general apathy. A few of the participant comments are listed.

  • "Because the standard practice is that they call you if something is wrong."
  • "I do not care about the results."
  • "They always call me."
  • "No news is good news."
  • "If there were reason for concern, the doctor would call."
  • "Too much going on in life."
  • "I get an email advising that the results are available online."
  • "The results are always available at the next visit."

Receiving a Diagnosis

In-person communication to receive a diagnosis was preferred by 87.7% of the weighted response set (n = 606) of respondents. See Figure 2 for total responses. Although most respondents prefer to receive a diagnosis in person, a smaller number of respondents prefer to use methods such as video conference, walk-in clinics, and other technology.

Figure 2. When Dealing with an Illness or New Health Problem, How Would You Prefer to Receive Your Diagnosis?

Responses were similar across the three age groups, with majority of respondents selecting in-person discussion (Figure 3). In the 18-to-34-year age group, 6.2% of the weighted response set (n = 606) chose the closest walk-in or express clinic or urgent care, compared with 2.5% and 3.8% in the two older age groups.

Figure 3. When Dealing with an Illness or New Health Problem, How Would You Prefer to Receive Your Diagnosis? (By age)

Withholding Medical Information

Of the individuals surveyed, 7.1% of the weighted response set (n = 606) reported withholding potentially important information, as shown in Figure 4.

Figure 4. Have You ever WIthheld Information from a Doctor, Nurse, or Other Healthcare Worker that Could Have Been Important?

Discussion

When No One Calls with Results

An open-ended question in the survey generated diverse responses about how much patients want to be involved in the diagnostic journey. The responses could be categorized into three themes: those who do not call and, instead, wait for follow-up; those who do not call and, instead, use other resources; and those who call. Those who do not call and await follow-up may prefer passive involvement in healthcare. Those who do not call but who use available resources refer to patient portals and emails. This may lead to less direct communication with the healthcare team but expedite providing test results to patients and family in a convenient manner.

Others are inclined to interact with the healthcare team, as they appear to seek a more assertive and collaborative role in their healthcare. As noted earlier, one respondent states, "I am the star." This quote may indicate a sense of empowerment. A patient who embodies this thought process would likely engage as an active participant in the diagnostic process; however, this may not be a realistic expectation for some individuals.

Healthcare professionals can be aware of the diverse perspectives and needs of individuals and develop diagnostic processes that accommodate various preferences. To improve the diagnostic process and other safety and quality initiatives, healthcare professionals must be open to the patient perspective and ensure their involvement.3 With the development of a partnership, healthcare professionals can learn individual needs and preferences, and thus improve the journey to diagnosis.

Receiving a Diagnosis

Survey respondents prefer to receive a diagnosis during an in-person discussion with their physician. This may validate the necessity of a risk reduction strategy, which is for physicians to maintain long-term continuity of care with patients.4 The other response options to this question are related to convenience and with fewer of these options selected, this may indicate a priority on relationship rather than someone assigned by manner of convenience. While diagnoses will continue to be delivered in unconventional ways or settings, they may not be preferred by patients for an initial diagnosis. 

One might surmise that younger respondents would have a different outlook on how to receive information, because communication preferences and technology use vary among generations. But this was not the case. Response distribution was similar across the three age groups. The in-person discussion with a physician was the way most respondents said they preferred to receive a diagnosis, but the younger individuals might be more inclined to use the closest walk-in or express clinic or urgent care. When caring for diverse populations, we must consider unique patient needs and preferences.

Withholding Medical Information

About 7% of survey respondents reported that they intentionally withheld information that could have been important, which has potential for negative sequelae. Other surveys have found that up to 50% of individuals admitted that they lied or deliberately mislead a physician during an encounter.5,6 In addition, patients may not realize that they have withheld information.5

Patients may withhold information for many reasons. The electronic health record has been referred to as a double-edged sword; it can improve quality, but concerns exist about privacy and security, which may culminate in nondisclosure to protect personal information.7 Additional reasons for nondisclosure include absence of physician inquiry, anticipation of physician disapproval, patient perceptions of relevance and importance, perceived physician disinterest, a fear of being judged, aversion to being lectured to, or fear of being viewed negatively.6,8 This may explain why patients lie or stretch the truth about topics such as diet, exercise, smoking, sex, alcohol intake, recreational drug use, and adherence to doctor's orders.6

Other reasons for withholding information may be that patients perceive that the healthcare team does not take problems seriously, dismisses their complaints, or does not listen to concerns about serious symptoms or deterioration.3 Correct diagnosis depends on a complete and accurate medical history; therefore, it is vital that patients are transparent. Development of meaningful relationships may create an environment where patients are less likely to withhold information.

A few strategies can be used to encourage patient disclosure of health information. Consider using open-ended questions or questions that inquire about the last time something was done.9 Communicate with patients the benefits of the electronic health record,7 use of the electronic health record to engage with personal health information, the consequences of nondisclosure and the benefits of full disclosure, and privacy and security issues with an emphasis on confidentiality and a safe environment.6 Consider behaviors that establish a personal connection, such as introductions, eye contact, and a sitting at eye level.

Patients as Partners

Although survey results indicate that Pennsylvania residents would rather receive a diagnosis from a physician with whom there is an established relationship, individuals have different needs and expectations when it comes to obtaining test results.

Inclusion of patients as active participants in the diagnostic process has been identified as a patient education strategy.4 The Authority interviewed a panel of experts and their comments make up the article, "Ask the Experts: A Roundtable Discussion with some of the Nation's Leaders in Improving Diagnosis," in this edition. In comments made during the expert panel but not included in the article, Sue Sheridan, a patient safety leader and advocate, stated that an invitation from the clinician or the clinical team to join them in the diagnostic journey is going to be vital. This is a role that some patients will not accept, and conversations about partnership development are needed. As survey results indicate, some patients may not want to embrace this role and prefer a more passive degree of involvement.

Patient partnerships have not historically been supported by medicine, but there has been a shift away from the "doctor knows best" culture with assistance from patient engagement initiatives,10 also described as a shift from a paternalistic to a patient-centered approach.8 The National Academy of Medicine (NAM) encourages healthcare professionals and organizations to partner with patients and families as diagnostic team members via engagement through alignment of needs, values, and preferences.1

NAM lists ways for healthcare professionals to engage patients and families, such as the following: provide opportunities for patients and family to learn about the diagnostic process, create comfortable environments to engage patients and families, ensure electronic health record access and active engagement, and include patients and families in efforts to improve diagnosis.

Patient partnerships may also occur through education about diagnosis. The Joint Commission has resources that can be found with the Speak-Up™ program, with a goal of helping patients and their advocates become active care participants.11 A toolkit, "The Patient's Toolkit for Diagnosis," was developed for patient use by the Society to Improve Diagnosis in Medicine (SIDM) and includes four areas of focus: preparing patients for an appointment, symptoms or pain, medications, and next steps after the doctor visit.12 The toolkit approaches healthcare as a patchwork of brightly colored fabrics. The patient's role is to stitch together the pieces to secure the quilt. It can help patients prepare for healthcare encounters, through inspiration to speak up and ask questions. Ideally, patient-provider partnerships will empower patients.

Limitations

A limitation to this study is that after the open-ended response for the question about calling when no one calls with results, there was no additional inquiry to provide insight about the response. The additional insight would be beneficial to determine strategies for the three themes of patient preferences.

The survey did not explore the reasons individuals have preferences about the ways they receive a diagnosis. In an effort to ensure accessibility today, healthcare organizations are using unconventional methods of care delivery. Because of a preference for in-person discussion with a physician, there may be potential for healthcare organizations to develop diagnostic processes specific to these nonconventional methods. Another opportunity would be to explore whether individuals in search of a diagnosis will defer medical care in cases in which they have access only to unconventional care delivery. A strong driver of healthcare today is insurance, or third-party payers. This component was not explored in relation to the three survey questions.

After the question about withholding information, this survey did not ask additional questions of those who answered yes. Inclusion of what information was withheld or why the information was withheld would be beneficial to healthcare teams in development of strategies.

Conclusion

Healthcare professionals need to engage patients, focus on their individual needs, and include them as active participants in the diagnostic process. Two key components to the diagnostic process include communication and education. These components help build the patient-provider partnership, which is paramount to the process. While most individuals surveyed prefer to receive a diagnosis in person, patients may have different needs and preferences that might require individualized approaches. Including the patient perspective in this important work is key to long-term success in improving diagnosis.

Notes

  1. National Academies of Sciences, Engineering, and Medicine. Improving diagnosis in health care. Washington (DC): The National Academies Press; 2015. Also available: https://www.nap.edu/catalog/21794/improving-diagnosis-in-health-care.
  2. NORC at the University of Chicago, IHI/NPSF Lucian Leape Institute. Americans' experiences with medical errors and views on patient safety: fact sheets. [internet]. Cambridge (MA): Institute for Healthcare Improvement (IHI); 2017 Sep 28 [accessed 2018 Jun 14]. Available: http://www.ihi.org/about/news/Documents/IHI_NPSF_Patient_Safety_Survey_Fact_Sheets_2017z.pdf.
  3. McDonald KM, Bryce CL, Graber ML. The patient is in: patient involvement strategies for diagnostic error mitigation. BMJ Qual Saf. 2013 Oct;22 Suppl 2:ii33-ii39. Also available: http://dx.doi.org/10.1136/bmjqs-2012-001623. PMID: 23893394.
  4. Diagnostic error in acute care. Pa Patient Saf Advis. 2010 Sep;7(3):76-86. Also available: http://patientsafety.pa.gov/ADVISORIES/Pages/201009_76.aspx.
  5. McCarthy K. Study: 50 percent of patients withhold information from their doctor. [internet]. South Jordan (UT): AdvancedMD, Inc.; 2014 Dec 19 [accessed 2018 Jul 13]. [5 p]. Available: https://www.nuemd.com/news/2014/12/19/study-50-percent-patients-withhold-information-their-doctor.
  6. Schwartz SK. When patients lie to you. [internet]. Buffalo (NY): Roswell Park Comprehensive Cancer Center; [accessed 2018 Jul 13]. [6 p]. Available: https://www.roswellpark.org/partners-practice/white-papers/when-patients-lie-you.
  7. Campos-Castillo C, Anthony DL. The double-edged sword of electronic health records: implications for patient disclosure. J Am Med Inform Assoc. 2015 Apr;22(e1):e130-40. Also available: http://dx.doi.org/10.1136/amiajnl-2014-002804. PMID: 25059953.
  8. Davis EL, Oh B, Butow PN, Mullan BA, Clarke S. Cancer patient disclosure and patient-doctor communication of complementary and alternative medicine use: a systematic review. Oncologist. 2012;17(11):1475-81. Also available: http://dx.doi.org/10.1634/theoncologist.2012-0223. PMID: 22933591.
  9. Callon W, Beach MC, Saha S, Chander G, Wilson IB, Laws MB, Sharp V, Cohn J, Moore R, Korthuis PT. Assessing problematic substance use in HIV care: which questions elicit accurate patient disclosures? J Gen Intern Med. 2016 Oct;31(10):1141-7. Also available: http://dx.doi.org/10.1007/s11606-016-3733-z. PMID: 27197974.
  10. Graber ML, Rusz D, Jones ML, Farm-Franks D, Jones B, Cyr Gluck J, Thomas DB, Gleason KT, Welte K, Abfalter J, Dotseth M, Westerhaus K, Smathers J, Adams G, Laposata M, Eichbaum Q, Nabatchi T, Compton M. The new diagnostic team. Diagnosis. 2017;4(4):225-38. Also available: https://www.degruyter.com/downloadpdf/j/dx.2017.4.issue-4/dx-2017-0022/dx-2017-0022.pdf.
  11. Speak Up initiatives. [internet]. Oak Brook (IL): The Joint Commission; 2018 [accessed 2018 Aug 01]. Available: https://www.jointcommission.org/speakup.aspx.
  12. The Patient's Toolkit for Diagnosis. [internet]. Society to Improve Diagnosis in Medicine (SIDM); [accessed 2018 Aug 01]. Available: https://c.ymcdn.com/sites/www.improvediagnosis.org/resource/resmgr/Patient_Toolkit_-_Fillable-1.pdf.
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