Abstract
Background:
Cancer survivors face many challenges including coordinating care across multiple providers and maintaining medical records from multiple institutions. Access and utilization of online medical records could help cancer survivors manage this complexity. Here, we examined how cancer survivors differ from those without a history of cancer with regards to utilization and perception of medical records.
Methods:
We conducted a cross-sectional study of 3491 respondents, from the Health Information National Trends Survey 5, Cycle 2. The association of medical record utilization and perceptions with cancer survivorship was assessed using survey-weighted logistic regression.
Results:
Cancer survivors (n=593) were more likely to report that a provider maintains a computerized medical record (Adjusted Odds Ratio [AOR] = 2.05; 95% CI = 1.24 −3.41) and were more likely to report confidence in medical record safeguards (AOR = 1.44; 95% CI = 1.03–2.03). However, cancer survivors were no more likely to access online medical records than those without a history of cancer (AOR = 1.13, 95% CI= 0.69–1.86). Cancer survivors were no more likely to report privacy concerns as a reason for not accessing online medical records, however, survivors were more likely to report a preference for speaking directly with a provider as a reason for not accessing online medical records (AOR = 2.24; 95% CI = 0.99–5.05).
Conclusion:
Although cancer survivors are more likely to trust medical record safe guards and do not express increased concerns about online medical record privacy, a preference to speak directly with provider is a barrier of use.
Keywords: online medical records, cancer survivors, perceptions, utilization, HINTS
INTRODUCTION
There are an estimated 16.9 million cancer survivors nationwide and the National Cancer Institute (NCI) has estimated that by 2029, the proportion of cancer survivors in the United States will increase by 29%.1 Improvements to cancer survivorship rates are due, in part, to advanced treatments and improved survivorship care planning. However, patients managing treatments and on-going long-term survivorship care require tools to assist with disease management and communications from multiple providers throughout the continuum of care.2 To optimize disease management, the American Cancer Society recommends that cancer survivors keep copies of 1) pathology reports, 2) imaging test results, 3) surgical records, 4) hospital discharge summaries, 5) medication records, 6) radiation therapy records, and 7) contact information for multiple providers.3 Managing all of these materials creates unique challenges for cancer survivorship and disease management. The complexity of this task is illuminated by the numerous guides that exist to assist cancer survivors in organizing their medical records.4–8 However, little is known specifically about how cancer survivors utilize and perceive medical record as compared to those without a history of cancer.
Broadly, medical records can exist as traditional paper records or electronic medical records.9 Online medical records are electronic medical records that patients can access through a secure online patient health portal. In 2009, the American Recovery and Reinvestment Act (ARRA) was signed into law, and mandated that all doctors and hospitals adopt “meaningful” use of electronic medical records by 2014 to maintain Medicare and Medicaid reimbursement levels.10 This has led to a dramatic increase in electronic medical record use nationwide. New rule changes proposed by the U.S. Department of Health and Human Services in February 2019 are designed to increase patient access to electronic medical records at no cost to patients.11
Considering the degree of disease management and continuous communication with multiple providers that cancer survivors must manage through their cancer care, cancer survivors are a unique patient population that may benefit from accessing medical records and additional services provided by patient health portals that host online medical records. Previous studies have reported that cancer survivors can benefit from having access to electronic medical records from their providers as a source to review follow-up visits, their treatment plan, and results from medical examinations12,13, as well as enhance their ability to relay their medical information to family members and providers within their survivorship care team.14 Access to online medical records, could potentially also facilitate access to cancer survivorship care plans. There have been some efforts to use electronic medical records to automate survivorship care plan creation15–17 and allow online access for cancer survivors17.
Importantly, patients who actively engage with their online medical records through patient health portals experience a 6% increased odds in medication adherence18 and, additionally report overall improvements in patient empowerment and understanding of their medical issues19,20. Beyond simply accessing records, patient health portals that host online medical records may offer other services that promote patient engagement. Depending on the services rendered by the host portal, patients may be able to also review medications21, message providers22, and create personal reminders thorough a patient diary option23. Access to the services provided online medical records may also have the potential to improve clinical outcomes24.
Despite the potential benefit of online medical records, cancer survivors could have distinctive concerns about accessing online medical records. Maintaining confidentiality and privacy are a primary concern regarding online medical records25. Medical information regarding cancer diagnosis and treatment can potentially be sensitive in nature, and cancer survivors could be concerned about unwanted disclosure to employers or others with whom they do not wish to share their diagnosis or treatment26. There is limited evidence to date regarding whether cancer survivors access medical records more often as it helps them manage their detailed medical history, or whether cancer survivors may be more likely to mistrust online access to medical records due to privacy concerns associated with sharing and third-party access to their medical information. Importantly, here we build on previous descriptive analyses of prevalence27, and to our knowledge, we are one of the first studies to comprehensively investigate how cancer survivors differ from those without a history of cancer with regards to utilization and perception of medical records while accounting for important confounders including age, gender, and race. Moreover, we further examined potential effect modification by older age (less than 65 vs. 65 and older) and gender.
METHODS
Study design and data source
We performed a cross-sectional analysis utilizing data from the Health Information National Trends Survey (HINTS), a previously-collected, nationally representative sample of the non-institutionalized U.S. adult population.28 Since 2003, HINTS has been administered by the NCI to provide information about how cancer risks are perceived and assess cancer information access and usage. Questionnaire items based on both medical records broadly and online medical records specifically began with HINTS 5, Cycle 2, therefore this secondary analysis is restricted to a sample of data collected from January 26 through May 2, 2018. This study was exempt from institutional review board review due to the use of publicly available, de-identified data.
The HINTS study design has been reported elsewhere.28 In brief, the sampling strategy consisted of a two-stage design in order to represent the entire U.S. population. In the first stage, a stratified sample of addresses was selected from the U.S. Postal Service file of residential addresses. In the second stage, one adult was selected within each sampled household. Potential respondents were mailed a questionnaire and 3,504 individuals submitted at least partially complete questionnaires generating a response rate of 32.9% for HINTS 5, Cycle 2. Our analytic study population included respondents with valid responses to the questionnaire item on history of cancer (n=3491). A cohort schema can be seen in Supplemental Digital Content 1.
Measures
Self-reported history of cancer from any site (n=593) was ascertained with the following questionnaire item: “Have you ever been diagnosed as having cancer?”. Those without a reported history of cancer represented the comparison group (n=2898) for analyses. Covariates were selected based on known confounders and risk factors for cancer including: age at the time of survey, gender, race, education and income. Trust, confidence, and access to medical records were ascertained by seven questionnaire items. Respondents who reported being offered access to online medical records were asked a series of further follow-up questions regarding online medical records utilization. These questions covered frequency of online medical record use, reasons for not using medical records (e.g. prefer to speak directly to a provider), reported reasons for using medical records, and medical record usefulness. Details regarding survey questions can be found in the supplemental material (Supplemental Digital Content 2).
Statistical analysis
Due to the complex survey design of HINTS, and to generate representative estimates of the total U.S. population correcting for nonresponse and non-coverage bias, we used survey weighting techniques in all analyses. A full-sample weight was used to calculate population estimates and 50 replicate weights were calculated using the jackknife variance estimation method to compute standard errors. Weighted chi-square tests for categorical variables and t-tests for continuous variables were used to compare differences in demographic characteristics by history of cancer. Weighted logistic regression models were fit assessing differences between those with and without a history of cancer for opinions, access to, and utilization of online medical records. Full models were adjusted for known confounders including age, gender, and race. Complete-case analysis was used for all analyses.
Sensitivity Analyses
Non-melanoma skin cancer patients may not represent the experience of other cancer survivors. Therefore, we conducted a sensitivity analysis where we excluded non-melanoma skin cancer patients from our study population. We also hypothesized medical record use and utilization may vary by age and gender, thus we examined potential effect modification by age (less than 65 vs. 65 and older) and gender in separate sensitivity analyses. All statistical analyses were conducted in SAS version 9.4 (SAS Institute Inc., Cary, NC).
RESULTS
We present demographic characteristics comparing cancer survivors to respondents with no history of cancer in Table 1. Among 3491 HINTS respondents, representing an estimated 248,808,025 non-institutionalized U.S. residents, cancer survivors were more likely to be older (63.21 years vs. 47.35 years, <0.0001), of White race (90.03% vs. 74.28%, <0.0001), and have higher levels of educational attainment (p = 0.0148) when compared to respondents with no history of cancer. There were no differences in gender and income by history of cancer. The most frequent cancer types among HINTS respondents with a single primary cancer were skin, breast, cervical, colon, and prostate. Approximately 20% of cancer survivors reported being diagnosed with more than one cancer type.
Table 1:
Demographic characteristics by history of cancer status, among 3491 respondents of HINTS 5 Cycle 2 – year 2018.
| All Respondents | No Cancer History | Cancer Survivors | ||
|---|---|---|---|---|
| N | 3491 | 2898 | 593 | |
| Estimated N | 248,808,025 | 225,448,699 | 23,359,326 | |
| N (Weighted %)a or Mean (SD) | p valueb | |||
| Gender | ||||
| Male | 1310 (49.10) | 1091 (46.50) | 219 (44.40) | 0.1238 |
| Female | 1911 (50.90) | 1596 (50.50) | 315 (55.60) | |
| Age, Mean (SD) | 48.83 (0.36) | 47.35 (0.42) | 63.21(1.13) | <0.0001 |
| Age Group | ||||
| 18 – 34 | 398 (23.81) | 391 (25.71) | 7 (5.36) | <0.0001 |
| 35 – 49 | 623 (26.65) | 584 (28.20) | 39 (11.51) | |
| 50 – 64 | 1056 (30.20) | 902 (29.78) | 154 (34.19) | |
| 65 – 74 | 697 (11.59) | 527 (10.18) | 170 (25.35) | |
| 75+ | 455 (7.76) | 291 (6.13) | 164 (23.60) | |
| Race | ||||
| Black | 551 (12.98) | 484 (13.67) | 67 (6.40) | <0.0001 |
| White | 2402 (75.78) | 1934 (74.28) | 468 (90.03) | |
| Other | 328 (11.24) | 305 (12.05) | 23 (3.57) | |
| Education | ||||
| Less than High School | 275 (8.99) | 238 (9.40) | 37 (4.99) | 0.0148 |
| High School Graduates | 630 (22.23) | 506 (21.67) | 124 (27.70) | |
| Some College | 1039 (39.99) | 849 (39.93) | 190 (40.57) | |
| College Graduate or More | 1507 (28.79) | 1275 (28.99) | 232 (26.73) | |
| Income | ||||
| < $20,000 | 577 (17.60) | 488 (17.88) | 89 (14.69) | 0.1939 |
| $20,000 - <$35,000 | 428 (11.85) | 339 (11.50) | 89 (15.39) | |
| $35,000 - <$50,000 | 404 (13.54) | 334 (13.31) | 70 (15.90) | |
| $50,000 - <$75,000 | 567 (17.81) | 467 (17.65) | 100 (19.37) | |
| ≥ $75,000 | 1109 (39.20) | 959 (39.65) | 150 (34.65) | |
Presented as column weighted percentage.
p values determined using either weighted Chi-square or t-tests.
Sub-groups may not sum to total respondents due to missing or invalid responses.
Cancer survivors were more than two-fold more likely (adjusted odds ratio (AOR) = 2.05; 95% CI = 1.24, 3.41) to report having a provider maintain a computerized medical record when compared to respondents with no history of cancer after adjustment for age, race, and gender (Table 2). Cancer survivors were 44% more likely (AOR = 1.44; 95% = 1.03, 2.03) to feel very confident in the safe guards of medical records when compared to respondents with no cancer history. Cancer survivors had a 46% increased likelihood of ever being offered online records (AOR = 1.46; 95% CI = 1.07, 2.01) when compared with those with no history of cancer; of which cancer survivors were six-fold more likely to report being offered access by a health care provider (AOR = 5.88; 95% CI = 1.79, 19.31). Cancer survivors were equally as likely to access online medical records at least once in the last 12 months of completing the survey as respondents without a history of cancer (Table 3). Cancer survivors were greater than two-fold more likely to report not accessing online medical records because they preferred to speak directly to their healthcare provider (AOR = 2.24; 95% CI = 0.99, 5.05). Cancer survivors and those without cancer history were equally likely to report concerns with privacy as a reason for not accessing medical records (AOR = 1.13; 95% CI = 0.43, 2.97). There was no difference between cancer survivors and those without a history of cancer with regards to not accessing online records due to lack of online access or no reported need. Similarly, there was no difference in cancer survivors and those without a history of cancer in utilizing medical records for medication refills, paperwork, to request a correction, messaging a healthcare provider, downloading records, or adding information. Models with additional adjustment for socioeconomic characteristics were consistent with our primary models (data not shown).
Table 2:
Odds Ratios (ORs) and 95% Confidence Intervals (CIs) for associations between history of cancer with odds of trust and access of medical records.
| Cancer Survivors (N = 593) |
No Cancer History (N = 2898) |
Model 1a | Model 2b | |
|---|---|---|---|---|
| Outcome | N (%)c | N (%)c | OR (95% CI) | OR (95% CI) |
| Provider Maintains Computerized Medical Record | ||||
| Yes | 507 (89.11) | 2288 (76.17) | 2.33 (1.45 – 3.75) | 2.05 (1.24 – 3.41) |
| No/Don’t Know | 76 (10.89) | 583 (23.83) | - | - |
| Confident in Medical Record Safe Guards | ||||
| Very | 228 (42.51) | 896 (31.54) | 1.49 (1.09 – 2.04) | 1.44 (1.03 – 2.03) |
| Somewhat & Not | 355 (57.49) | 1970 (68.46) | - | - |
| Withheld Info due to Privacy Concerns about Medical Record | ||||
| Yes | 35 (8.90) | 264 (9.08) | 1.31 (0.63 – 2.69) | 1.72 (0.82 – 3.64) |
| No/Don’t Know | 548 (91.10) | 2601 (90.92) | - | - |
| Ever Offered Online Records | ||||
| Yes | 347 (60.34) | 1510 (49.86) | 1.67 (1.24 – 2.25) | 1.46 (1.07 – 2.01) |
| No/Don’t Know | 244 (39.66) | 1375 (50.13) | - | - |
| Offered Online Medical Record Access by Health Care Provider | ||||
| Selected | 323 (98.66) | 1416 (94.04) | 4.13 (1.08 – 15.76) | 5.88 (1.79 – 19.31) |
| Not Selected | 11 (1.34) | 62 (5.96) | - | - |
| Offered Online Medical Record Access by Insurer | ||||
| Selected | 54 (14.74) | 319 (22.58) | 0.72 (0.42 – 1.24) | 0.66 (0.37 – 1.16) |
| Not Selected | 280 (85.26) | 1159 (77.42) | - | - |
Model adjusted for age
Model adjusted for age, race, and gender.
Presented as column total and weighted percentage
( - ) Represents referent outcome. No cancer history group is referent for odds ratio exposure.
Sub-groups may not sum to total respondents due to missing or invalid responses.
Table 3:
Odds Ratios (ORs) and 95% Confidence Intervals (CIs) for associations between history of cancer with online medical record utilization among respondents ever offered online medical record access (n=1857)
| Cancer Survivors (N = 347) |
No Cancer History (N = 1510) |
Model 1a | Model 2b | |
|---|---|---|---|---|
| Outcome | N (%) c | N (%) c | OR (95% CI) | OR (95% CI) |
| Online Medical Records Access and Use Frequency | ||||
| Frequency of Use in Last 12 Months | ||||
| ≥ 1 | 192 (58.60) | 905 (58.53) | 1.16 (0.71 – 1.89) | 1.13 (0.69 – 1.86) |
| None | 145 (41.40) | 587 (41.47) | - | - |
| Reasons for Not Using Online Medical Record | ||||
| Prefer to Speak Directly to Provider | ||||
| Yes | 115 (85.82) | 431 (71.04) | 1.98 (0.89 – 4.44) | 2.24 (0.99 – 5.05) |
| No | 19 (14.18) | 132 (28.96) | - | - |
| No online Access | ||||
| Yes | 23 (12.74) | 71 (9.34) | 0.90 (0.41 – 1.98) | 0.99 (0.42 – 2.30) |
| No | 110 (87.26) | 491 (90.66) | - | - |
| No need | ||||
| Yes | 77 (67.15) | 345 (64.76) | 1.04 (0.51 – 2.11) | 1.02 (0.48 – 2.18) |
| No | 56 (32.85) | 218 (35.24) | - | - |
| Concerned about Privacy | ||||
| Yes | 19 (14.49) | 91 (12.22) | 1.01 (0.40 – 2.54) | 1.13 (0.43 – 2.97) |
| No | 114 (85.51) | 469 (77.12) | - | - |
| Reason Online Medical Record Was Utilized | ||||
| Medication Refill | ||||
| Selected | 83 (41.69) | 357 (38.49) | 0.99 (0.61 – 1.62) | 1.02 (0.63 – 1.65) |
| Not Selected | 112 (58.31) | 534 (61.51) | - | - |
| Paperwork | ||||
| Selected | 82 (45.79) | 356 (43.63) | 1.25 (0.74 – 2.09) | 1.30 (0.78 – 2.15) |
| Not Selected | 115 (54.21) | 531 (56.37) | - | - |
| To Request Correction | ||||
| Yes | 20 (9.98) | 60 (6.24) | 1.55 (0.56 – 4.30) | 1.62 (0.62 – 4.23) |
| No | 176 (90.02) | 826 (93.76) | - | - |
| Messaging HCP | ||||
| Yes | 98 (46.61) | 438 (52.97) | 0.73 (0.46 – 1.15) | 0.77 (0.49 – 1.23) |
| No | 100 (53.39) | 451 (47.03) | - | - |
| Downloading Records | ||||
| Yes | 53 (24.01) | 240 (25.50) | 0.95 (0.56 – 1.62) | 1.04 (0.62 – 1.75) |
| No | 144 (75.99) | 652 (74.50) | - | - |
| Adding Info | ||||
| Yes | 55 (27.92) | 210 (23.01) | 1.45 (0.89 – 2.37) | 1.42 (0.87 – 2.33) |
| No | 142 (72.08) | 678 (76.99) | - | - |
| Making Decision | ||||
| Yes | 53 (27.15) | 219 (23.52) | 1.33 (0.81 – 2.18) | 1.39 (0.86 – 2.26) |
| No | 145 (72.85) | 670 (76.48) | - | - |
| Usefulness | ||||
| How Useful is Medical Record? | ||||
| Very & Somewhat | 159 (81.65) | 735 (82.76) | 0.97 (0.43 – 2.22) | 0.95 (0.42 – 2.17) |
| Not Very/Not At All/Don’t Use | 35 (18.35) | 149 (17.24) | - | - |
Model adjusted for age
Model adjusted for age, race, and gender
Presented as column total and weighted percentage
( - ) Represents referent outcome. No cancer history group is referent for odds ratio exposure.
Sub-groups may not sum to total respondents due to missing or invalid responses.
Sensitivity Analyses
Findings were consistent when non-melanoma skin cancer patients (~28%) were excluded from analyses, Supplemental Tables 1–2. (Supplemental Digital Content 3).
Gender stratified models are presented in Supplemental Tables 3–4 (Supplemental Digital Content 3). In general, our findings were consistent between men and women. However, among men, cancer survivors were significantly more likely to report using an online medical record to add information (Men AOR = 3.15; 95% CI = 1.32, 7.49). Among women, cancer survivors did not differ from those without a history of cancer in utilizing online medical records to add information (Women AOR = 0.83; 95% CI = 0.37, 1.87).
Age stratified models (age 65 and older vs. less than 65 are presented in Supplemental Tables 5–6 (Supplemental Digital Content 3). Once again, findings were generally consistent between individuals age 65 and older and individuals less than 65 years of age. However, cancer survivors less than 65 years of age were more likely to report that they did not utilize online medical records because they preferred to talk to a provider directly as compared to those less than 65 without a history of cancer (less than 65 AOR = 4.53; 95% CI = 1.18, 17.44), although results were very imprecise due to small sample sizes in stratified analysis. No significant association was observed among those 65 and older (AOR = 0.88, 95% CI = 0.27, 2.84).
DISCUSSION
In this study, we examined how cancer survivors compare to those without a history of caner with regards to the utilization and perception of medical records. Cancer survivors represent a distinct patient population that faces many unique challenges including coordinating care across multiple providers, organizing and maintaining medical records from multiple institutions and providers during and after treatment completion. In this nationally representative sample, we found that cancer survivors were more likely to report that a provider maintains their computerized medical records, and were also more likely to report receiving an offer to access online medical records compared to those without a history of cancer. This increased access to online medical records could be partly attributed to cancer survivors’ having multiple providers, particularly at large medical centers with electronic medical systems as well as extended engagement with healthcare systems due to their on-going survivorship care. However, despite this, in our study, we observed that over 40% of cancer survivors have never accessed their online medical records. Increasing online medial utilization has the potential to increase patient engagement, enhance continuity of care, promote patient empowerment, and aid in informed decision-making among all patients, and particularly cancer survivors.14,20,29
While a greater proportion of cancer survivors reported receiving access to online medical records, they were no more likely to utilize medical records than respondents without a history of cancer (AOR = 1.13; 95% CI = 0.69, 1.86). This observation of increased access to online medical records without increased utilization, suggests the interplay of multiple determinants that influences a survivor’s utilization of online medical records. Specifically, cancer survivors were almost two-fold more likely to report not using online medical records because they prefer to speak directly with their provider. The current study supports previous findings that effective patient-provider communication is an important determinant for online medical record utilization.22,30 Wherein the current study observed that respondents prefer to talk directly with a healthcare provider rather than accessing online medical records; Strekalova et al.31 observed that a healthcare provider’s recommendation increased the likelihood of online medical record utilizations. Collectively, these findings underscore patient-provider communication as a vital determinant of online medical record utilization and effective survivorship care. Previous research has shown that patient-provider communication is related to both cancer patients’ quality of life and satisfaction.32 Although online medical records can potentially enhance patient-provider communication by allowing patients to prepare for their inpatient visits and better recall relevant care issues33, our findings suggest that cancer survivors must feel assured that online medical information supplements, rather than replaces, direct contact with a provider. Moreover, cancer survivors may prefer to talk directly with providers due to the complexity of cancer follow-up care and psychosocial needs. Cancer survivors are more likely to have additional scans and tests for recurrence34, as compared to those without a history of cancer. While online access to these tests may be convenient, the absence of on-going trusted patient-provider communication to help interpret tests results and address immediate questions may discourage utilization of online medical records altogether.
In addition, although we adjusted for age in our models, cancer patients tend to be older than the general population, and as such, may be more likely to have limited digital literacy. In general, older adults often prefer written materials over digital materials and report feeling ignored by organizations implementing digital technologies.35 Previous research among breast cancer survivors 55 years and older, found that cancer survivors preferred to receive survivorship care information from brochures rather than from the internet or computer-based educational sources.36 Finally, qualitative research among patients living with a chronic disease has indicated that to be effective, online medical records must be “multifaceted, self-care promoting, and integrated into the patient’s existing health and psychosocial infrastructure”.37 If the cancer patients in our study did not view online medical records as useful, this may have enhanced their desire to speak directly with a provider. In our study, cancer survivors and those without a history of cancer were equally likely to report having “no need” to access medical records. We also observed that reasons for medical record utilization did not vary between cancer survivors and those without a history of cancer. The lack of observed difference in these findings could indicate that current online medical records do not fully meet the unique needs of cancer survivors. Overall, our findings further illustrate the on-going challenge of effectively integrating information technology tools with patient-provider interactions.30
Beyond online medical utilization, our study also examined cancer survivors’ perceptions of medical records. Given the sensitive nature of medical information regarding a cancer diagnosis and the potential consequences of unwanted medical information disclosure to employers or others, we hypothesized that cancer survivors may be more concerned with the safety and confidentiality of their online medical records. Surprisingly, we found that cancer survivors were significantly more likely to report feeling very confident in medical record safeguards. In addition, there was no difference in avoidance of the usage of online medical records due to privacy concerns between cancer survivors and those without a history of cancer. These findings are consistent with limited previous research. In a study where respondents were presented with various hypothetical scenarios regarding electronic health information and then asked their willingness to share the information, those with a history of cancer were more willing to share inherited genetic information as compared to those without a history of cancer.38 It is possible that increased contact and interaction with the healthcare system, such as that experienced by cancer survivors, may increase confidence in existing safeguards. The decreased confidence among those without a history of cancer may be a characteristic of a less engaged patient population.
Moreover, we did observe that among individuals less than 65 years of age, cancer survivors were significantly more likely to report not utilizing medical records because they preferred to speak directly to a provider. A corresponding association was not observed in individuals greater than or equal to 65 years of age. One possible explanation is that older patients – both with and without a history of cancer – prefer to speak to a provider directly, and being a cancer survivor does not influence this preference. This could potentially be driven by a lack of trust of online health information resources by older adults or limited digital literacy.39 It is also possible that having a history of cancer induces an increased preference for direct provider communication among those younger than 65.
Our study builds on previous descriptive data27, and is one of the first to comprehensively examine cancer survivors’ utilization and perception of medical records as compared to those without a history of cancer, utilizing a large, nationally representative data source while accounting for important confounders. However, our study does have some limitations, including self-report bias and a cross-sectional design. It is also possible that other unmeasured comorbid conditions could impact medical record utilization and perceptions, possibly attenuating our results. In addition, we do not know which online medical records cancer survivors had access to, and ascertainment of the type of online medical records cancer survivors have access to may be important from a care coordination and/or quality of life perspective. Moreover, we were not able to control for cancer stage and severity. In addition, our study sample included both those diagnosed with cancer recently and those diagnosed many years ago (35% five or less years from diagnosis; 18% 6–10 years from diagnosis; and 47% eleven or more years from diagnosis). The inclusion of this heterogenous group of cancer survivors may have attenuated our findings. Finally, we were not able to account for computer literacy, which could have influenced our findings. Despite these limitations, we were able to demonstrate significant differences in cancer survivors’ utilization and perception of online medical records as compared to those without a history of cancer. Key strengths of this study include a large, nationally representative patient population, detailed information on medical record utilization and perceptions, and a direct comparison of cancer survivors with those without a history of cancer. Our study demonstrates that cancer survivors trust medical record safeguards more than those without a history of cancer, direct communication with a provider remains a primary concern. It is important that future efforts to incorporate online medical records into cancer survivorship care coordination enhance patient-provide communication, rather than replace it. Although access to online medical records needs to be increased, it will be important that any increases in access are accompanied by increases in utility
Conclusion
In this nationally-representative sample, cancer survivors are more likely to report that a provider maintains their computerized medical records and are more likely to trust medical record safeguards in place than those without a history of cancer. Cancer survivors are no more likely than those without a history of cancer to choose not to access online medical records due to concerns about privacy. However, cancer survivors are more likely to choose not to access online medical records due to a preference to speak directly with a provider.
Supplementary Material
Supplemental Digital Content 1.pdf
Supplemental Digital Content 2.pdf
Supplemental Digital Content 3.pdf
AKNOWLEDGMENTS
This research was supported by the National Cancer Institute of the National Institutes of Health (NIH) under Award Number T32 CA190194 and by the Foundation for Barnes-Jewish Hospital and Siteman Cancer Center. SK was funded by the Department of Defense Grant PC170130. MEL was supported by an NIDDK UroEpi career development award K12DK111028. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.
Footnotes
CONFLICT OF INTEREST:
The authors declare that they have no conflict of interest.
COMPLIANCE WITH ETHICAL STANDARDS
This study was exempt from institutional review board review due to the use of publicly available and de-identified data.
DATA AVAILABILITY
The datasets generated during and/or analyzed during the current study are publicly available from the Health Information National Trends Survey (HINTS) website: https://hints.cancer.gov/data/default.aspx
REFERENCES
- 1.National Cancer Institute: Office of Cancer Survivorship. Statistics, graphs, and definitions. https://cancercontrol.cancer.gov/ocs/statistics/index.html. Accessed January 4, 2020.
- 2.Noordman J, Driesenaar JA, van Bruinessen IR, et al. Evaluation and implementation of listening time: a web-based preparatory communication tool for elderly patients with cancer and their health care providers. JMIR Cancer. 2019;5(1):e11556. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 3.American Cancer Society. 2016. Keeping Copied of Important Medical Records. https://www.cancer.org/treatment/survivorship-during-and-after-treatment/be-healthy-after-treatment/keeping-copies-of-important-medical-records.html. Accessed September 4 2019.
- 4.American Society of Clinical Oncology. 2014. https://www.cancer.net/blog/2014-03/clearing-clutter-tips-organizing-medical-information. Accessed September 4, 2019.
- 5.Begley M 5 tips for organizing your medical files [Memorial Sloan Kettering Cancer Center]. 2019. https://www.mskcc.org/blog/5-tips-organizing-your-medical-files. Accessed September 4, 2019.
- 6.BREASTCANCER.ORG. Managing your medical records. 2016. https://www.breastcancer.org/tips/managing_records. Accessed September 4, 2019.
- 7.Johns Hopkins Medicine . Medical records: getting organized. https://www.hopkinsmedicine.org/health/wellness-and-prevention/medical-records-getting-organized. Accessed September 4, 2019.
- 8.Simon JM. Cancer patients: tips for organizing medical records [MD Anderson Cancer Center]. 2013. https://www.mdanderson.org/publications/cancerwise/cancer-patients-tips-for-organizing-medical-records.h00-158833590.html. Accessed September 4 2019.
- 9.HealthIT.gov. What are the differences between electronic medical records, electronic health records, and personal health records? 2019. https://www.healthit.gov/faq/what-are-differences-between-electronic-medical-records-electronic-health-records-and-personal. Accessed October 28, 2019.
- 10.Burke T The health information technology provisions in the American Recovery and Reinvestment Act of 2009: implications for public health policy and practice. Public Health Rep 2010;125(1):141–145. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 11.U.S. Department of Health and Human Services. HHS proposes new rules to improve the interoperability of electronic health information. 2019. https://www.hhs.gov/about/news/2019/02/11/hhs-proposes-new-rules-improve-interoperability-electronic-health-information.html. Accessed October 28 2019.
- 12.Kuijpers W, Groen WG, Oldenburg HS, et al. eHealth for breast cancer survivors: use, feasibility and impact of an interactive portal. JMIR Cancer. 2016;2(1):e3. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 13.Lanigan M, Lee TM, Torp L, et al. Using electronic medical records system to advance cancer survivorship programs. JCO;2018;36(7_suppl): 65. [Google Scholar]
- 14.Rexhepi H, Ahlfeldt RM, Cajander A, et al. Cancer patients’ attitudes and experiences of online access to their electronic medical records: A qualitative study. Health Informatics J. 2018;24(2):115–124. [DOI] [PubMed] [Google Scholar]
- 15.Hill-Kayser CE, Jacobs LA, Gabriel P, et al. Feasibility Study of an Electronic Interface Between Internet-Based Survivorship Care Plans and Electronic Medical Records. J Oncol Pract 2016;12(4):e380–387. [DOI] [PubMed] [Google Scholar]
- 16.Mayer DK, Taylor K, Gerstel A, et al. Implementing survivorship care plans within an electronic health record. Oncology. 2015;29(12):980–982. [PubMed] [Google Scholar]
- 17.Tevaarwerk AJ, Wisinski KB, Buhr KA, et al. Leveraging electronic health record systems to create and provide electronic cancer survivorship care plans: a pilot study. J Oncol Pract 2014;10(3):e150–159. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 18.Wright E, Darer J, Tang X, et al. Sharing physician notes through an electronic portal is associated with improved medication adherence: quasi-experimental study. J Med Internet Res 2015;17(10):e226. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 19.Delbanco T, Walker J, Bell SK, et al. Inviting patients to read their doctors’ notes: a quasi-experimental study and a look ahead. Ann Intern Med 2012;157(7):461–470. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 20.Pai HH, Lau F, Barnett J, Jones S. Meeting the health information needs of prostate cancer patients using personal health records. Curr Oncol 2013;20(6):e561–569. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 21.Pagliari C, Detmer D, Singleton P. Potential of electronic personal health records. BMJ 2007;335(7615):330–333. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 22.Lyles CR, Sarkar U, Ralston JD, et al. Patient–provider communication and trust in relation to use of an online patient portal among diabetes patients: The diabetes and aging study. J Am Med Inform Assoc 2013;20(6):1128–1131. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 23.Redelmeier DA, Kraus NC. Patterns in patient access and utilization of online medical records: analysis of MyChart. J Med Internet Res 2018;20(2):e43. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 24.Mold F, Raleigh M, Alharbi NS, et al. The impact of patient online access to computerized medical records and services on type 2 diabetes: systematic review. J Med Internet Res 2018;20(7):e235. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 25.Woodman J, Sohal AH, Gilbert R, et al. Online access to medical records: finding ways to minimise harms. Br J Gen Pract 2015;65(635):280–281. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 26.Davis KA, Smith LB. Ethical considerations about EHR-mediated results disclosure and pathology information presented via patient portals. AMA J Ethics 2016;18(8):826–832. [DOI] [PubMed] [Google Scholar]
- 27.Johnson C, Krakow M, Patel V. Access and use of electronic health information by individuals with cancer: 2017–2018 ONC Data Brief, 2020;(No. 50). Office of the National Coordinator for Health Information Technology: Washington DC. [Google Scholar]
- 28.Nelson DE, Kreps GL, Hesse BW, et al. The Health Information National Trends Survey (HINTS): development, design, and dissemination. J Health Commun 2004;9(5):443–460. [DOI] [PubMed] [Google Scholar]
- 29.Earnest MA, Ross SE, Wittevrongel L, et al. Use of a patient-accessible electronic medical record in a practice for congestive heart failure: patient and physician experiences. J Am Med Inform Assoc 2004;11(5):410–417. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 30.Irizarry T, DeVito Dabbs A, Curran CR. Patient portals and patient engagement: a state of the science review. J Med Internet Res 2015;17(6):e148. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 31.Strekalova YA. Electronic health record use among cancer patients: insights from the health information national trends survey. Health Informatics J 2019;25(1):83–90. [DOI] [PubMed] [Google Scholar]
- 32.Ong LM, Visser MR, Lammes FB, et al. Doctor-patient communication and cancer patients’ quality of life and satisfaction. Patient Educ Couns 2000;41(2):145–156. [DOI] [PubMed] [Google Scholar]
- 33.Woods SS, Schwartz E, Tuepker A, et al. Patient experiences with full electronic access to health records and clinical notes through the My HealtheVet personal health record pilot: qualitative study. J Med Internet Res 2013;15(3):e65. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 34.Ganz PA. Quality of care and cancer survivorship: the challenge of implementing the institute of medicine recommendations. J Oncol Pract 2009;5(3):101–105. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 35.Chadborn NH, Blair K, Creswick H, et al. Citizens’ juries: when older adults deliberate on the benefits and risks of smart health and smart homes. Healthcare. 2019;7(2):54. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 36.Royak-Schaler R, Passmore SR, Gadalla S, et al. Exploring patient-physician communication in breast cancer care for African American women following primary treatment. Oncology nursing forum. 2008;35(5):836–843. [DOI] [PubMed] [Google Scholar]
- 37.Winkelman WJ, Leonard KJ, Rossos PG. Patient-perceived usefulness of online electronic medical records: employing grounded theory in the development of information and communication technologies for use by patients living with chronic illness. J Am Med Inform Assoc 2005;12(3):306–314. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 38.Grande D, Asch DA, Wan F, et al. Are patients with cancer less willing to share their health information? Privacy, sensitivity, and social purpose. J Oncol Pract 2015;11(5):378–383. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 39.Zulman DM, Kirch M, Zheng K, et al. Trust in the internet as a health resource among older adults: analysis of data from a nationally representative survey. J Med Internet Res 2011;13(1):e19. [DOI] [PMC free article] [PubMed] [Google Scholar]
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