Perspectives from neuro-oncology providers on patient access to electronic records: a survey study

Abstract

Aim: To evaluate the neuro-oncology providers' experience with patient online access to electronic records. Methods: Cross-sectional survey for physicians and advanced care providers within the field of neuro-oncology in the USA. Results: 65 providers completed the survey, from all major regions of the USA. 58% reported that at least once per month, patients contacted them outside of an office visit about provider notes or a laboratory or imaging finding accessed online. 54% of providers did not think that all laboratory results should be released automatically, and only 25% of providers thought that all radiology reads should be released immediately. 97% thought that some patients suffered substantial distress viewing test results prior to appointments. Qualitative responses aligned with the quantitative results. Conclusion: Most neuro-oncology providers are concerned about the immediate release of laboratory and imaging findings to patients without guidance.

Plain language summary

Prior studies had investigated the perspectives of medical providers on patients having immediate access to medical records. However, almost none of them focus on neuro-oncology. In our study, we distributed a survey electronically to neuro-oncology providers across the USA to seek their perspectives. Our results show that most neuro-oncology providers found patients having immediate access to their records to be useful. However, they raised concerns about the immediate release of laboratory and imaging findings to patients without guidance. Our study also included free responses from the neuro-oncology providers that could help mitigate this concern.

TWEETABLE ABSTRACT

Our cross-sectional study shows that neuro-oncology providers are concerned about the immediate release of laboratory and imaging findings to patients without guidance. #Neuro-oncology #BrainCancer

Summary points

• We conducted a cross-sectional survey to evaluate the neuro-oncology providers' experience with the open notes concept.

• 65 neuro-oncology providers completed the survey, from all major regions of the USA, including both quantitative results and free responses.

• Our results indicated that most neuro-oncology providers found open notes as a useful tool for engaging patients in their care.

• However, there were concerns about the immediate release of laboratory and imaging findings to patients without guidance.

• Future work can consider surveying neuro-oncologic patients to seek their perspectives and experience accessing test results via an online portal.

Keywords: :

• medical records
• oncology
• survey

1. Background & Significance

Starting 5 April 2021, the federal 21st Century Cures Act required healthcare organizations to allow immediate access to medical records for patients, which is often done through an online portal, a concept also known as ‘open notes’ [1]. Clinicians have generally supported this move because it helps them engage with patients meaningfully [2]. This also helps patients feel that they can take control of their own care and better remember their care plans [3,4]. Some argue that access to records helps address the ethical problem of injustice in healthcare [5].

However, there are challenges with patients accessing records, especially without guidance. Not knowing and understanding medical terminology is one of the top concerns raised by patient users [6]. A minority of patients also reported that records were confusing, which could cause them to worry or experience increased anxiety [3,7]. As a result, patients tend to not favor the automatic release of important results related to Alzheimer's disease and cancer [8].

Some providers have also voiced concerns that providing open notes leads to more time spent on documentation [9]. Provider opinions about open notes mainly reflect the perspective of primary care providers, with fewer reports from specialists [10]. However, a substantially smaller percentage of specialists have been shown to recommend open notes to their colleagues compared with primary care providers [2].

There is little literature on the impact of open notes on oncology from the providers' perspective, and even less information on neuro-oncology. The current study aims to address this gap in knowledge.

2. Materials & methods

2.1. Study design

We conducted a cross-sectional survey of physicians (MD or DO) and advanced care providers (nurse practitioner or physician assistant) who practice in the field of neuro-oncology within the USA. The web-based survey consisted of 12 questions, including eligibility, state of practice, two qualitative and eight quantitative questions, inquiring about the provider's preferences, and comments on notes and records shared with patients. The questions were based on the published work of DesRoches et al. and Ralston et al. [2,10]. The institutional review board of The University of Texas MD Anderson Cancer Center provided approval of the study (protocol 2023-0285), including a waiver for consent given the low-risk nature of this survey. Study data were collected and managed using Research Electronic Data Capture (REDCap).

2.2. Recruitment

A link to the web-based survey (REDCap) was distributed through an email database from the American Academy of Neurology Neuro-Oncology Section. Individual providers from major academic centers were also contacted to encourage their participation.

2.3. Statistics

The quantitative survey responses were summarized using frequencies and percentages. The Fisher's exact test was used to assess the associations between questions of interest. A two-sided p-value of <0.05 was considered significant. All analyses were performed in SAS 9.4.

3. Results

3.1. Cohort characteristics

A total of 65 participants completed the survey, and they all self-identified as neuro-oncology providers. All major regions (Northeast 25%, Midwest 19%, South 38%, West 18%) of the USA were represented; 27% of providers practiced in Texas, 11% in Massachusetts, and 11% in California.

3.2. Quantitative results

As shown in Table 1, most providers (78%) agreed or somewhat agreed that open notes are a useful tool for engaging patients in their care, with more approved providers from the South (95.8%) compared with other major geographic regions (p = 0.007). More than a third of the providers (34%) reported that at least once per month, patients asked during an office visit about something in the provider's written documentation in open notes. Almost half of providers (48%) reported that at least once per week, patients asked during an office visit about a laboratory or imaging finding they had accessed from open notes. Responses indicating that the provider regularly received a high frequency of questions (at least once per week or once per month) about written documentation in open notes were significantly associated with responses indicating a high frequency of questions about a laboratory or imaging finding during office visits (p = 0.043). In addition, most providers (58%) reported that at least once per month, patients contacted them outside of an office visit about written documentation or a laboratory or imaging finding in open notes.

Table 1. Quantitative survey results from the 65 participants.

Question	No. (%)
In general, do you agree open notes are a useful tool for engaging patients in their care?
Agree	17 (26)
Somewhat agree	34 (52)
Somewhat disagree	10 (15)
Disagree	4 (6)
In the past 12 months during office visits, how often did a patient bring up something about a documentation you have written?
At least once per week	2 (3)
At least once per month	20 (31)
Less frequently than once per month	43 (66)
In the past 12 months during office visits, how often did a patient bring up about a lab or imaging finding they accessed from open notes?^†
At least once per week	31 (48)
At least once per month	25 (39)
Less frequently than once per month	8 (13)
In the past 12 months OUTSIDE of office visits, how often did a patient contact you about a documentation you have written, a lab result, or imaging findings they accessed from open notes?
At least once per week	18 (28)
At least once per month	20 (31)
Less frequently than once per month	27 (42)
Do you agree with the following statement: all lab results should be released automatically as soon as they are available?
Agree	12 (18)
Somewhat agree	18 (28)
Somewhat disagree	10 (15)
Disagree	25 (38)
Do you agree with the following statement: all radiology reads should be released automatically as soon as they are available?
Agree	4 (6)
Somewhat agree	12 (18)
Somewhat disagree	16 (25)
Disagree	33 (51)
Do you agree with the following statement: some patients suffer significant distress from the automatic release of test results prior to provider's appointments?
Agree	48 (74)
Somewhat agree	15 (23)
Somewhat disagree	2 (3)
Disagree	0 (0)
Do you agree with the following statement: you spend a significant amount of time explaining or reassuring patients on otherwise benign test results?
Agree	26 (40)
Somewhat agree	32 (49)
Somewhat disagree	6 (9)
Disagree	1 (2)

^† One participant had a missing value for this question.

More than half of providers (54%) did not agree that all laboratory results should be released automatically to patients as soon as the results are available. Only 25% of providers agreed that all radiology reads should be released immediately. Almost all providers (97%) agreed that some patients suffered substantial distress from viewing test results prior to the office visit. In addition, many providers (89%) reported that they spent a substantial amount of time explaining or reassuring patients about otherwise benign test results, although that proportion is lower for providers from the Midwest (64%) compared with other major geographic regions (p = 0.020).

3.3. Qualitative responses

55 of the 65 participants provided qualitative responses. Common themes included online results causing patients substantial distress or anxiety (19 responses). Here is an example: “Frequently, patients see their imaging results via the online portal and call, asking for an explanation. This happens even if they have an appointment in a few days, as they are understandably anxious, but certainly increases our workload and their anxiety simultaneously.” Another provided commented, “The main issue with [open notes] are pathology reports –patients who can see the results of their pathology/initial diagnosis before the clinic appointment to review those results. This is a source of great distress for those who look at results too far in advance of the visit.”

Seventeen providers recommended that records be delayed from being posted online until either after the office visit or after a certain timeframe. One suggested, “Pathology, radiology, and critical lab results should be embargoed for 24–48 hours to give physicians time to see and respond to them.” Similarly, another provider stated, “Ideally, some of the more sensitive information like pathology reports might best be delayed a few days, up to one week, to give enough time to the medical team to explain the findings.”

Seven comments revolved around the theme that results should not be released automatically or at least that patients should be given the option to choose whether records are released automatically. One provider shared, “Patients can opt out of immediate access or the provider can release results once a discussion has occurred with the patient regarding imaging and test results.” Another provided also commented, “I would recommend making access opt-in. Patients, when initiating care at a center should have access to their information if they want it and should be informed of the possibility of getting information prior to visits.”

Five providers indicated that they needed to spend more time during or outside of their office visits because patients were concerned about the results they saw online. One provider wrote, “Open notes can somewhat be concerning for the patients, especially the lab and [magnetic resonance imaging] results, as these tests do not take into consideration the clinical picture of the patient. This has sometimes caused anxiety and restlessness in my patients, resulting in recurrent calls and messages.”

4. Discussion

The current study focused on the impact of open notes from the perspective of neuro-oncology providers from all major regions of the USA. Our results indicate that providers frequently received inquiries about their written documentation or laboratory or imaging findings during and outside of office visits. Most providers did not think that laboratory or imaging findings should be released automatically online for patients to review because this might lead to patient distress and increase the amount of time needed to discuss otherwise benign test results. Qualitative responses aligned with the quantitative results.

A previous survey of general oncologists and non-oncologists showed that oncologists were significantly less enthusiastic about sharing clinic notes with patients, likely because of the sensitive nature of the content [11]. Similarly, a study done in the USA found there is more enthusiasm from patients than oncology clinicians toward open notes [12]. In another study done in Sweden, oncology providers reported changes in their documentation practices because patients are now accessing electronic health records [13]. Patients already face the anxiety of waiting for results or interpretation after imaging studies (also known as ‘scanxiety’) [14], so releasing the findings to them before an office visit and without proper guidance raises the ethical concern of nonmaleficence (do no harm). This is a concern that was expressed in a semi-structured interview study with 13 oncologists [15]. In the current study, providers recommended three strategies to mitigate that concern based on their free responses. First, patients could have the choice to opt out of the automatic release of imaging or laboratory results. Second, laboratory or imaging findings could be delayed from being released into the shared online portal for a few days until the providers can review them and contact their patients. These suggestions are consistent with a scoping review indicating that the timing of test results release is an emerging topic that should be addressed at the policy level [16]. Third, laboratory and imaging results could be delayed from release (or patients could have the option to delay) until after the office visit. This is in alignment with a prior survey study showing that most patients prefer to discuss test results regarding their cancer status at in-person appointments [8]. Alternatively, while this was not suggested by the providers in our survey, incorporating artificial intelligence into electronic health records may be a future approach to help patients understand their test or imaging results [17]. However, this remains to be ongoing research.

Despite the strengths of including both quantitative and qualitative responses, this study has several limitations. To keep the survey short and anonymous, we did not collect additional provider characteristics such as their specific role and years of practice. Our study sample is small and we were unable to include an accurate response rate, although this is in the context of less than 300 board-certified neuro-oncologists in the USA, and we were able to gather responses from all major regions [18]. In addition, there is subjectivity in the definition of certain terms in the survey for the responders, such as ‘significant amount of time or distress’ or ‘benign’, so their perceptions may vary, and we did not include a qualitative tool to adjust that or in-depth interviews to explore those concepts. Finally, sample and response biases are also considered to be possible limitations given this is a self-reported survey study.

5. Conclusion

In summary, our results indicated that most neuro-oncology providers found open notes as a useful tool for engaging patients in their care. However, there were concerns about the immediate release of laboratory and imaging findings to patients without guidance. Future work can consider surveying neuro-oncologic patients to seek their perspectives and experience accessing test results via an online portal. This can be done as a single-center or national survey study.

Author contributions

K Lam and S-P Weathers designed the study. K Lam, S-P Weathers, C Wathoo, and Z Soomro collected the data. K Lam, CH Leung, C Wathoo, and S-P Weathers analyzed the data. K Lam, CH Leung, and S-P Weathers drafted and edited the manuscript. All authors approved the final manuscript.

Financial disclosure

The authors have no financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending, or royalties.

Competing interests disclosure

The authors have no competing interests or relevant affiliations with any organization or entity with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending, or royalties.

Writing disclosure

No writing assistance was utilized in the production of this manuscript.

Ethical conduct of research

The institutional review board of The University of Texas MD Anderson Cancer Center provided approval of the study (protocol 2023-0285), including a waiver for consent given the low-risk nature of this survey.

Acknowledgments

We thank E Goodoff, Senior Scientific Editor in the Research Medical Library at The University of Texas MD Anderson Cancer Center, for editing this article.