The clinician-patient relationship in the era of information transparency

INTRODUCTION — Relationships among medical providers, patients, and their families continue to change as systems of care and biomedical knowledge evolve. How can patients and those who care for them connect, particularly during a time of enormous stress on the health care system? At the foundational level, open and transparent communication with patients can lay the groundwork for positive clinician-patient relationships. Today, shared medical records can help foster such communication; effective information exchange; and treatment plans that are generated jointly by clinicians, patients, and often family members. Facilitated by rapidly evolving electronic health records (EHRs) and the secure patient portals that accompany them, bringing patients and clinicians together on the "same page" has become far more feasible. The availability of clinical notes to patients through the patient portal ("open notes") offers a concrete and unique opportunity to use transparency to improve the clinician-patient relationship.

This topic reviews regulations in the United States regarding information transparency, EHRs, and opportunities and challenges that greater transparency poses for clinicians and patients and offers suggestions and strategies for facing these challenges.

MOVEMENT TOWARD MORE OPEN AND TRANSPARENT COMMUNICATION — A considerable body of research suggests that offering patients easy access through a patient portal to clinical visit notes and related health data can enhance communication and may improve the quality and safety of care [1-5]. Reflecting this research, in the United States, federal regulation brought about by the 21^st Century Cures Act requires clinicians and organizations to make electronically available to patients, on request, virtually all information in their electronic health records (EHRs) [6]. This is to happen without delay, special effort, or additional cost, although organizations are not required to inform patients about their right to access this information. Known as the "information blocking rule," this regulation represents an enormous change in the accessibility of EHR data for patients. While the practice of sharing clinician notes with patients was spreading in the United States prior to the rule, clinicians, healthcare organizations, and EHR vendors determined what information would be available through the patient portal, and patients' access to information remained generally restricted and was not uniform across the health care system.

The information blocking rule applies to all care settings and includes all of the digital or electronic information in the record that a clinician might use to make decisions about a patient's care. In general, most organizations have chosen to comply with the rule by making information available to patients through a patient portal.

While there are exceptions to this rule, they are limited and narrowly written and must be applied on a case-by-case basis. The two most pertinent exceptions that affect the clinician-patient relationship are those related to patient privacy and harm. Under the "privacy exception," clinicians can withhold information from the portal if the patient requests it due to concerns about the privacy of the information. The "harm exception" allows clinicians to withhold information from the portal if they have a reason to believe it may cause harm. There is some ambiguity in the harm exception; a patient's request for information may be denied if the health care provider has a reasonable expectation that fulfilling the request will result in harm to the life or physical safety of the patient, physician, or other person. However, if a patient’s legal representative makes a request, it can be denied if the health care provider has reason to believe releasing the data will cause substantial harm [7]. Substantial harm is currently undefined in the regulation. The American Medical Association has asked for more clarity around this exception and for explicit inclusion of emotional distress in the category of substantial harm [8]. . (See 'Concerns of harm' below.)

WHAT DOES RESEARCH SUGGEST ABOUT PATIENTS READING THEIR NOTES?

The effect of note reading on patients — Much of the research assessing the consequences of patients' easy access to their health data has focused on access to ambulatory care clinical notes. A large majority of those who read these notes report a number of clinically relevant benefits, including:

●Having improved understanding of their health and medical conditions [9]

●Having better recall of their care plan [10]

●Feeling better prepared for visits [10]

●Feeling more in control of their care [10]

●Taking better care of themselves [9]

●Being more likely to take their medications as prescribed [1]

●Feeling more capable of engaging in shared decision-making [2]

●Forming stronger, more trusting relationships with their doctors [11]

●Families and informal care partners also appreciate access to notes and report that reading notes helps them in ways similar to patients [12,13]

Disparities in access appear to exist: Patients with less than high school education; those who do not usually speak English at home; or those who self-identify as a person of color, older, or Hispanic are not as likely to be offered access to or to register on patient portals and are therefore less likely to read their notes [14-16]. However, preliminary studies suggest that when such patients do read notes, they may be more likely than their counterparts to report benefits. For example, in one study, 75 percent of patients speaking a primary language other than English reported that reading their notes helped them to understand why a medication was prescribed, compared with 64 percent of English speakers [1]. Similarly, in a study of more than 22,000 participants, 84 percent of Black patients rated reading notes as extremely important for taking care of their health, compared with 72 percent of White patients [9]. A study focused on documentation errors found that 44 percent of non-White patients reported feeling "much" or "somewhat better" about their health care provider after reading their notes, compared with 32 percent of White patients [17]. Comparisons of older with younger patients in these studies show a similar pattern, with patients older than age 65 being more likely than their younger counterparts to report benefits [9,18].

Effect of health information transparency on patient safety and quality of care — The proposal to share full medical records with patients was first raised by Shenkin and Warner in 1973, and improving the quality of care was among the positive effects they anticipated [19]. Five decades later, studies demonstrate that transparent notes have the potential to improve patient safety and quality of care by helping patients to remember and complete diagnostic tests and referrals, identify documentation errors, and strengthen patient-clinician relationships.

Completion of diagnostic tests and referrals — Studies suggest that 40 to 80 percent of what is discussed in a visit is forgotten by patients after the medical encounter and that some information may be remembered incorrectly. This phenomenon may be worsened in patients with older age, anxiety, stress, less formal education, and higher volume of information/number of items to recall [20,21]. Overall, adherence and follow-up to clinician recommendations rely on patient or care partner recall [22].

Multiple studies demonstrate that reading notes helps patients to understand or remember next steps to further their care [9,11,23]. In a study of over 10,000 patients and families who read at least one visit note in two large academic hospitals, approximately 75 percent of respondents reported that reading notes helped them to better understand the rationale for tests and referrals and made them more likely to check and understand test results. Approximately one-half of respondents reported that reading notes helped them remember to complete tests and referrals. These results were similar in studies of adolescents and young adults and were even more pronounced among care partners supporting patients who are of older age or living with chronic conditions [12,24-26]. Patient and family members have offered compelling accounts in which access to their health information, including test results, could have potentially been lifesaving [27].

Delayed diagnostic tests or referrals are a well-recognized cause of diagnostic error: a common, costly, and harmful threat to safety [26,28,29]. Experts estimate that diagnostic errors affect 12 million Americans annually and occur in 5 percent of primary care visits [30]. They are a leading cause of ambulatory care malpractice claims, including missed or delayed cancer diagnoses, and can lead to substantial morbidity and mortality [29,31]. To help prevent diagnostic errors, the landmark National Academy of Medicine report on improving diagnosis urged active engagement of patients and families in the diagnostic process [26]. (See "Diagnostic errors".)

Identification of documentation errors — One tenet of patient safety is that a problem should be examined from multiple perspectives [32]. Patients and families are important contributors to their own medical safety. They have unique knowledge about their symptoms and conditions and are often the only connecting thread between health care encounters. Patient and family perspectives about their care and about events that transpire outside the health care organization can provide a more "360 degree" view of safety events, enhancing organizational learning. In numerous inpatient and outpatient studies, patients and families have identified clinically relevant medical errors or breakdowns, including those that may not be apparent to health care providers or organizations ("blind spots") [33-39].

Errors in electronic health records (EHRs) are common. Among others, they include medication errors, "copy and paste" behaviors that propagate outdated or erroneous information in electronic notes, imported templates with information that was not reviewed during the visit, errors in dictation transcription, or errors of omission including those resulting from poor interoperability among health care systems. In a 2019 Kaiser Family Fund study of 1190 nationally representative adults in the United States, 21 percent reported that they or a family member found an error in their EHR [40]. In another study of nearly 23,000 patients surveyed at three United States health centers in 2017, 21 percent of patients who read at least one ambulatory visit note reported an error in their notes; 44 percent considered the error to be somewhat or very serious [3]. In a subsequent retrospective study of this cohort, researchers found that 6.4 percent of patients who read notes reported at least one breakdown in the diagnostic process [41]. Examples of breakdowns included erroneous medical history, such as wrong or missing key symptoms, patients not feeling heard, problems or delays in diagnosis or next steps, and problems or delays with tests or referrals. Over one-half of these patient-reported diagnostic breakdowns represented potential blind spots, defined as "breakdowns in diagnostic processes and outcomes that represent a threat to diagnostic safety and cannot be easily captured or addressed by health care staff alone". These included events occurring outside of the organization, omissions, or diagnostic misalignments between patients and clinicians [42]. Patients who were older or had poorer self-reported health were more likely to identify blind spots in their notes.

Emerging literature demonstrates that a substantial minority of patients and families report concerns related to diagnostic process breakdowns in their care. Research involving 6079 patients and family members living with chronic conditions and visits in primary or subspecialty care at two academic health centers revealed that approximately 11.2 percent reported diagnostic process concerns prior to the visit, such as problems or delays with tests or referrals, or not feeling heard [43,44]. An additional study at one site focusing on patients at high risk for diagnostic error also demonstrated that patients reported diagnostic concerns after reading their visit notes [45]. Among the 418 patients who read notes and had a primary care visit followed by an unplanned visit within 14 days, 12.2 percent reported that they did not think the initial diagnosis was accurate. Compared with those who did not report an inaccurate initial diagnosis, these patients were more likely to disagree with statements that the care plan addressed all of their concerns, that they trust their clinician, or that they "had a good feeling" about the visit.

Effect on clinician-patient relationships — Many clinicians worry that sharing notes with patients may harm the clinician-patient relationship. Similar to patient data, 26 percent of surveyed clinicians anticipated that patients will find nontrivial errors in notes [17]. However, among 4592 primary care patients who read at least one note, nearly all reported feeling better (37 percent) or the same (62 percent) about the doctor. In another study of 10,252 individuals at two sites, most patients and family members reported overall greater or unchanged trust, teamwork, activation, and alignment with the provider after reading notes. Similar results were reported in a study of care partners [12]. In a study of 178 veterans receiving mental health services at one hospital, sharing notes was associated with improved clinician-patient relationships for most patients, although some reported negative emotions, including stress, worry, or upset. Some patients (including those with posttraumatic stress disorder) were troubled by reading notes that they felt had minimized their problems [46].

Additional factors and areas in need of further research — As technological advances accelerate while the culture of transparency grows, opportunities to engage patients in safety through health information transparency will likewise expand. A qualitative study of a codesigned patient safety guide to support primary care patients and care partners in the United Kingdom noted patient identification of errors in their records [47]. A cluster-randomized trial demonstrated that patients who used a personalized health record online tool were more likely to identify potentially harmful medication discrepancies than those who did not use the tool [48]. Other proposed diagnostic uncertainty and safety net tools can be integrated into notes to engage patients in safety [49,50]. Several previsit tools have demonstrated potential for improving quality of care or patient safety, including the opportunity to incorporate patient contributions into clinicians' visit notes [43,44,51-53].

A key limitation of many studies related to health information transparency and patient safety is equitable implementation, which will require larger studies with more diverse patient populations and the development of concurrent strategies to ensure that these interventions do not inadvertently worsen digital divides or other health care disparities. A study of 596 patients and family members reporting diagnostic errors in a nationally representative sample of the United States population in 2017 demonstrated unique self-reported contributing factors to perceived diagnostic errors among patients with limited English-language health literacy or disadvantaged socioeconomic position, including inaccurate or outdated medical records [54]. One opinion piece outlined potential perils of shared notes, focusing primarily on privacy concerns and access to data that may disproportionately harm marginalized groups, such as those LGBTQIA+, adolescents, and individuals who are survivors of violence [55]. The authors include a list of recommendations including education, rigorous consent procedures, safeguarding of data, explicit use of proxy portal registration (as opposed to shared accounts), and trauma-informed care practices for charting.

Concerns related to stigmatizing language in notes and the potential damage that it may cause to clinician/patient relationships suggest a need to strengthen clinician awareness about how to write notes in ways that empower patients and avoid offense. The potential negative impacts of stigmatizing language include offending patients, harming the patient-clinician relationship, and biasing others who later read the note in the EHR. Formal curricula for medical students and residents, as well as continuing education for practicing clinicians could help to ensure that clinicians are documenting in a way that empowers patients and minimizes potential harms [31].

Immediate sharing of test results — The 21^st Century Cures Act and the resulting information blocking rule require clinicians and health care organizations to make test results electronically available to patients as soon as the results are available, with few exceptions. Most health care organizations have chosen to push results to the patient portal to comply with the rule, resulting in patients often having access to results before the ordering clinician has had time to review them. Unlike sharing clinical notes, where there is a considerable body of research supporting the practice, not much is known about how the immediate release of test results affects patients and clinicians.

In studies conducted prior to the implementation of the information blocking rule and based on hypothetical situations, patients varied in their appetite for receiving test results prior to hearing from their clinicians. One study suggested that patients were much more willing to receive results through the portal than physicians believed them to be (particularly if they had to wait for results) [56]. A second study found that patients were willing to receive the results of routine screening or tests for non-life-altering diagnoses through the portal but preferred to hear the results of tests and imaging studies for life-altering or -limiting conditions from their physicians [57].

A 2022 survey of patients who accessed their test results through patient portals at four health care organizations found that 95 percent of these patients wanted to continue to receive results as soon as possible, even if it meant viewing them before their clinician [58]. Few patients reported being more worried after viewing results on the portal, regardless of whether the results were normal or not. (See 'Prepare patients who may see test results before you do' below.)

STRATEGIES FOR ADDRESSING CHALLENGES RELATED TO TRANSPARENCY — Increased transparency may offer considerable benefit to patients and families; however, the practice is not without challenges, and many questions remain unanswered. We review these concerns and offer strategies for addressing them below.

Concerns of harm — The 21^st Century Cures allows clinicians to withhold information if there is a reasonable expectation that releasing the information will result in physical harm to the patient, clinician, or another person [59]. For example, clinicians treating a patient with a major depressive disorder might withhold a note from the portal if it contains information, such as a diagnosis of a life-limiting illness, if they believe it will increase that patient's risk of suicide. Or, a clinician could withhold information about a patient's reproductive health care if they have reason to believe that the disclosure of that information through the patient portal could put the patient at risk of physical harm from a spouse, significant other, or sexual partner. It is important to note that there is some ambiguity around the definition of harm when a request for information is made by a patient's legal representative rather than the patient. You may wish to consult your compliance officer if you are unsure about whether your concerns are sufficient to justify withholding information. Most commercial electronic health record (EHR) systems have a mechanism for withholding information. However, remember that the Health Insurance Portability and Accountability Act guarantees patients access to all of the information in their records. Even if a clinician chooses to withhold information from release to the portal, patients can still request it through an official records request with a health information management department.

Privacy concerns — The information blocking rule allows providers to withhold information from the portal at the request of a patient. Like all exceptions defined in the rule, this one must be applied on a case-by-case basis and cannot be used to block all information from the portal. You may wish to have a conversation with a patient about their preferences for sending information to the portal and should document any patient request for information to be withheld. It is difficult to develop policies for practice when such issues arise; they are best managed with frank conversation among patients, clinicians, and, at times, family members on a case-by-case basis.

A patient perceives mistakes in documentation — Studies demonstrate that roughly one in five patients who reads notes may report a documentation error, and 26 percent of primary care clinicians anticipate that patients will find a nontrivial error in their notes [3,17,34,40]. In a study of 4572 patients who read notes at three United States sites, roughly 8 percent reached out to their provider's office. The most common reason for contacting the office was to clarify what the clinician said. The second most common reason, reported by 29 percent of respondents, was to call attention to a potential error. Among these, 85 percent were satisfied with the resolution [17].

Although some patients who find perceived errors in notes may have a negative perception of the clinician, in qualitative studies, many report a desire to partner with clinicians to improve the accuracy of a note, citing that "doctors are human" [18]. In one study of 5712 patients participating in a patient feedback tool linked to open notes, 72 percent of those patients reporting a safety concern also provided positive feedback about their clinician. In other studies, patients reported negative impacts, such as feeling frustrated or disengaged or leaving the clinician's practice, not necessarily on account of the error itself but due to lack of response to their efforts to correct the perceived error, especially if this happened repeatedly [3,41].

By law, patients have a right to submit a formal amendment request when they perceive an error in their medical record. In the reporting tool study, after clinician review, 64 percent of patient safety concerns were deemed definite or possible safety issues and 2 percent of participants with safety concerns requested a formal amendment form. Roughly one-half of patients who find perceived errors do not reach out to clinicians about them. They cite barriers to speaking up, such as not knowing whom to call or how, not feeling certain if the problem is an error, concern that "nothing will be done," or fear of retribution [60].

Patients have generated innovative recommendations to help engage patients and families in documentation error reporting through the patient portal [60]. While there is no standard of care for informing patients about how to report a potential error, organizations likely have a process for handling such reports when patients do speak up [3,34]. These processes can include direct follow-up with the patient from the clinician, clinician's office, patient experience team, or patient relations group. Some, but not all, EHR systems offer patients the opportunity to ask for corrections to medication and problem lists.

Specific steps clinicians can take when patients perceive errors

●Explain to patients what to expect before they read notes, including potential unintended effects of note dictation, if used (preparation is key and time well spent!).

●Explain limitations of corrections in the form of "addenda." (For example, when using an amendment, clinicians should tell patients that amendments typically appear at the end of the note.)

●Help patients differentiate between issues that can wait until a next appointment versus issues that should be addressed immediately.

●Invite patient feedback. There are potentially important benefits from patients' opportunity to fact-check their own histories. (See 'Effect of health information transparency on patient safety and quality of care' above.)

●If adding new information to the note that was not discussed in the visit, such as new tests results, flag this information as "after the visit…" or "upon further consideration…" [31].

●Acknowledge the patient's concern. If the patient perceives an error (and went through the trouble to try to contact the clinician or clinician's office), they may in fact be right and/or have reported something important to their patient experience [31,34].

●Actively responding to patient feedback may enhance both accuracy and the clinical relationship [34,41]. Even if clinicians do not find the patient's concern clinically relevant, understanding it may be a good learning opportunity, providing a lens to what matters to patients.

●Distinguish between facts (which should be corrected) and clinical opinions (which can be amended at the discretion of the clinician) [31,61].

●Know how to amend notes and how to seek further support. For example, using an addendum, unfortunately, does not reduce the risk of future copy and paste propagation of errors in the EHR. In extreme cases, such as notes entered on the wrong patient or egregious errors, medical records or health information management departments may assist the clinician in removing the erroneous note or part of the note.

●Agree to disagree. If a patient reports an error or requests a change that the clinician refutes, agree to disagree and document both perspectives in the note.

Avoiding offending or upsetting patients — Clinicians who are new to sharing notes and other information through the portal often express worries about upsetting or offending patients. Research suggests that this happens infrequently, with approximately 1 in 10 patients reporting feeling judged and/or offended by something they read in a note [62]. The most common reasons for reporting feeling judged or offended were: perception that the note contained an error or something that was not discussed in visit; labeling language, both negative (ie, "disheveled") and positive (ie, "pleasant"); or evidence of disrespect.

Clinicians can reduce the likelihood that patients will feel judged or offended by ensuring that the documentation reflects the content of the visit and that the patient's perspective is respectfully recorded. Acknowledging both perspectives (clinician's and patients') within a note and, at the visit, without dismissing a patient's concerns or symptoms may help build trust. Using language that acknowledges patients' strengths as well as areas of continuing challenge can promote engagement. Asking oneself "How would I feel if this were written about me?" may prompt more inclusive, empowering language that benefits patients. Formal education that addresses the harms of stigmatizing language and the potential of using notes to empower patients could help clinicians to navigate this change.

Documenting confidential concerns for adolescent patients — Limited research guides clinicians caring for adolescents in the practice of sharing transparent medical records. Data suggest that adolescents and young adults derive benefits similar to those reported by older patients [25,63]. However, sharing transparent medical records with adolescents also brings unique challenges [64].

State laws vary with respect to the age at which adolescents can access "confidential" services and the types of information that must be kept confidential and not accessible by parents and guardians.

Remember that confidential information can be found in parts of the medical record other than the clinical notes. Confidential concerns could appear in problem lists, test results, and medications, among others. Current, foolproof technological fixes do not exist for this problem, and many organizations providing care to adolescents simply do not provide portal accounts for patients and their families during their adolescent years.

This topic is discussed in further detail separately. (See "Confidentiality in adolescent health care".)

Reducing bias — A growing body of evidence suggests that bias can be transmitted through clinical documentation. For example, studies have found a higher incidence of negative descriptors such as "noncompliant" and "refused" in EHR documentation for Black patients as compared with White patients [65,66]. In a study in which clinicians were presented with clinical vignettes, the presence of these racial descriptors was associated with more negative feelings toward the Black patient and less aggressive pain management [67]. Bias in the record is not limited to race. Language that stigmatizes gender identity (eg, misgendering patients in documentation) and sexual orientation (eg, pathologizing sexual and gender minorities) has also been documented in the research literature [68]. Further, a 2021 study found that the notes of female patients had a higher incidence of "weaponized" quotes, that is, patient quotes that blame or cast doubt on a patient's story [66]. Finally, a study involving the review of the clinical notes of 139 clinicians found explicit social class stereotyping where physicians quoted incorrect grammar or nonstandard oversimplified medical terms, possibly conveying social class bias [69].

Efforts to address bias and thereby improve health equity should include access to clinical documentation as part of the strategy. A synthesis of the literature suggests the following best practices for eliminating bias in clinical documentation [70]:

●Use person-first language (eg, "person with diabetes" instead of "diabetic").

●Eliminate terms that may appear pejorative (eg, relapse, drug user, patient appears unkempt, is disorganized).

●Make communication personal rather than generic (eg, "uses a wheelchair" instead of "wheelchair bound").

●Describe rather than label (eg, "has not completed treatment yet" instead of "noncompliant", "is unable to provide full details" instead of "poor historian").

●Avoid blaming language (eg, "treatment was not successful" instead of patient "failed" treatment).

●Do not make assumptions about pronouns, gender identity, or sexual orientation. If clinically relevant (or if documenting), use the specific language that the patient uses.

●Avoid clinically unnecessary or irrelevant patient descriptors. (eg, race, incarceration history, remote substance use).

●Use patients' quotes judiciously. Avoid using quotes that use vernacular language or incorrect grammar or that otherwise signal disbelief of a patient's story or cast blame on a patient.

●Avoid language that casts doubt on the patient's experience (eg, "patient states" instead of "patient claims").

Documenting mental health and illness — With the exception of psychotherapy notes that often contain the therapist's reflections on their own feelings, notes from mental or behavior health visits must also be shared under the information blocking rule. In studies, patients and health care professionals report benefits from patients reading such notes, including: empowering patients to address mental health and illness actively, reducing stigma associated with mental illness and its treatment, and enhancing the therapeutic alliance [46,71-74].

Nevertheless, health professionals often worry about how to document sensitive issues or diagnoses (eg, substance use disorders, trauma, and other psychiatric diagnoses) when writing open notes. Here are some suggestions:

●Invite your patients to read your notes – Inviting patients to read notes can increase mutual trust and enhance the therapeutic relationship.

●Promote transparency – Unless you believe such a conversation might harm your patient, write about things you discussed and discuss with your patients what you will write about.

●Use plain language, and show respect – Avoid using medical jargon, and write in a way that respects your patient and accurately represents a session.

●Engage your patient in the documentation – Tell your patients that they can ask, "How are you going to document this?" Let them know that while they have the right to access their record, the health professional must still satisfy professional requirements and standards of documentation.

●Develop options if a patient's access to notes may carry more risk than benefit – You may decide with the patient to withhold a note from the patient portal. Or, you may discuss embargoing a note until a future date.

●Protect against abuse – Patients who are at risk for abuse are especially vulnerable and warrant special consideration. Work closely with these patients to ensure safety, possibly by withholding notes from the portal. The same precautions are true for all aspects of the medical record and should be applied to therapy notes, including holding notes back from the portal.

●Discuss the diagnosis – Discuss diagnoses and other important details with patients before documenting them. Patients do not like surprises in their notes [62].

●Create a plan – Have a discussion with your patients, and come up with a plan for what they should do if they become worried or upset by reading their notes or if they disagree with something in them.

Prepare patients who may see test results before you do — To comply with the information blocking rule that test results must be immediately available to patients upon request, most organizations have chosen to release test results to the patient portal as soon as they are complete. This strategy can result in a patient viewing a result before the ordering clinician has had time to review it or communicate with the patient. Knowing that a patient may see a result before you, it can be important to discuss your reasons for ordering the test with the patient. You can also explain what you expect to find and what the results could mean. Such conversations offer patients insight into your clinical reasoning and help promote open and transparent communication.

Health care organizations are dealing with the mandate for immediate release of results in different ways. Some are encouraging their clinicians to talk to patients in advance and to let them know the results will be available on the portal. Others are including language with the result indicating that the ordering clinician may not have reviewed it yet and asking the patient to wait to be contacted. Such language can address patient concerns about when results will be discussed with them by stating that the care team may wait to contact them until after all test results have come back or may be planning to review them at an upcoming appointment. Further, language can address patient concerns about abnormal results by noting that not all results marked as abnormal are cause for concern.

Finally, some health care organizations have taken the step of turning off portal notifications in response to a steep increase in the number of portal messages sent by patients after viewing a test result [75]. Therefore, some patients remain unaware that such results are available.

Dealing with in-basket or communication overload — Many health care organizations report dealing with a large increase in "in-basket" notifications. In-basket notifications include a mix of test results; responses to referrals; notifications about care that patients received from other providers; requests for medication refills; and messages from patients, physicians, and other health care professionals. Many such messages can affect clinician-patient relationships negatively [76]. For example, at three large practices (two primary care and one specialty), 46 primary care physicians (PCPs) received a mean (standard deviation) of 76.9 (38.0) notifications per day [77]. A survey of 934 physicians (72 percent response rate) found that physicians received an average of 243 messages per week, with 30 being directly from patients [78]. Another study found that 43 percent of in-basket messages were from patients [76]. As physicians struggle to review all of their inbox messages, this relatively low proportion of messages from patients may result in their being unintentionally overlooked or perhaps not addressed in a timely and thorough fashion. Overall, managing messages is associated with physiologic indicators of stress and may lead to or increase feelings of burnout among clinicians [76,78,79].

Researchers and expert groups have developed recommendations to help physicians manage in-basket messages. For example, in a national survey of Veterans Health Administration PCPs, the PCPs described five strategies to manage messages, and these themes were validated by expert interviews. The themes included (1) in-basket content should provide actionable information for patient care, (2) messages should not be lost (especially test result messages), (3) the in basket should be optimized to improve efficiency, (4) certain messages should be delegated to team members, and (5) time should be provided to respond to messages [80]. Expert groups, such as the American Medical Association and National Academy of Medicine, have incorporated these and other findings from research and practice into practical recommendations [81,82]. They note the importance of organizing messages into buckets to make it easier to identify important information from or about patients. They suggest, whenever possible, assigning certain message types to nonphysician team members. For example, nurses might be the first to receive and address refill requests.

FUTURE CONCERNS — Fundamental and rapid technological changes are affecting health care and health care relationships, and there are many unknowns. Patients can now access their information through third-party apps outside of the patient portal and easily record visits on their smartphones. What does this imply for who will own the medical record in the future? What role will artificial intelligence play in clinician documentation and helping patients to understand their information? How can we ensure that advances in technology do not make long-standing inequities in the health care system worse?

What is almost certain is that the pace of technological change is likely to increase, not slacken. Innovators should underscore the role of technology in service to improving face-to-face time and relationships between patients and clinicians, rather than as a replacement for this essential component of care and healing. Centering on the principles of open and transparent communication between clinicians and patients will help ensure that these changes enhance rather than damage the clinician-patient relationship.

SUMMARY AND RECOMMENDATIONS

●Open communication requirements – In the United States, the 21^st Century Cures Act requires clinicians and organizations to make electronically available to patients virtually all of the information in their electronic health records (EHRs). (See 'Movement toward more open and transparent communication' above.)

●Effect of patients reading their own notes – The ability of patients to read their own notes has a potentially beneficial effect on the patients themselves, and health information transparency may also improve quality of care. (See 'The effect of note reading on patients' above and 'Effect of health information transparency on patient safety and quality of care' above.)

●Challenges related to health information transparency – Challenges related to health information transparency should be anticipated and addressed. (See 'Strategies for addressing challenges related to transparency' above.)

•Potential to cause harm – Patients may request that information not be made transparent. Clinicians can withhold information from the patient portal if there is a reasonable expectation that releasing the information will result in physical harm to the patient, clinician, or another person. This may be particularly important for patients who are survivors of domestic violence or are at risk of abuse. (See 'Concerns of harm' above and 'Privacy concerns' above.)

•Patient perceives an error in documentation – Patients may correctly or incorrectly perceive and report errors in their medical record. Specific steps should be taken in this situation. (See 'Specific steps clinicians can take when patients perceive errors' above.)

•Using respectful language and discussing sensitive topics and diagnoses with patients – Clinicians can reduce the likelihood that patients will feel judged or offended by ensuring that the documentation reflects the content of the visit and the patient's perspective is respectfully recorded. The way in which sensitive topics and diagnoses are documented can be discussed with the patient. Efforts can be made to reduce bias in clinical documentation. (See 'Avoiding offending or upsetting patients' above and 'Reducing bias' above and 'Documenting mental health and illness' above.)

•Adolescent patients – Sharing transparent medical records with adolescents brings unique challenges related to confidentiality with respect to parents and guardians. (See 'Documenting confidential concerns for adolescent patients' above.)

•Preparing patients who may see test results before you do – Patients may be able to view test results before the ordering clinician has had time to review them or communicate with the patient. It can be important to discuss the reasons for ordering the test with the patient during the visit and to explain what you expect to find and what the results could mean. (See 'Prepare patients who may see test results before you do' above.)

ACKNOWLEDGMENT — The UpToDate editorial staff acknowledges Margaret Gerteis, PhD, who contributed to earlier versions of this topic review.