Online Medical Record Access for Breast and Prostate Cancer Screening Recall

Overseen By Cheryl Thompson, PhD

Age: 18+

Sex: Any

Trial Phase: Academic

Sponsor: Case Comprehensive Cancer Center

No Placebo Group All trial participants will receive the active study treatment (no placebo)

Compensation: Varies

Number of Visits: 2

100 Participants Needed

Trial Summary

What is the purpose of this trial?

The purpose of this research is to try to better understand how much information relating to cancer screening and diagnoses that people can recall on their own and to better understand how to help people get better information. In this study, investigators will see if giving time or other resources help individuals remember more and more accurate details about their cancer screening and care.

Will I have to stop taking my current medications?

The trial protocol does not specify whether you need to stop taking your current medications.

What data supports the effectiveness of the treatment Accessing personal medical records online via online portals?

Research suggests that online access to medical records can improve patient satisfaction and convenience, as well as enhance the organization and delivery of care, particularly for managing chronic conditions like diabetes. ^{1 2 3 4 5}

Is it safe for patients to access their medical records online?

Research indicates that patients accessing their medical records online generally find it convenient and it can improve their understanding of their health. No adverse events were reported in studies, but there are concerns about privacy and the need for timely communication from healthcare providers. ^{6 7 8 9 10}

How does online medical record access differ from other treatments for cancer screening recall?

Online medical record access is unique because it empowers patients by allowing them to view their health information and test results directly through a secure web portal. This approach enhances patient engagement and understanding of their medical issues, which can improve healthcare outcomes and prepare them better for doctor visits, unlike traditional methods that rely solely on in-person consultations. ^{2 5 8 11 12}

Research Team

Cheryl Thompson, PhD

Principal Investigator

Case Comprehensive Cancer Center

Eligibility Criteria

This trial is for individuals in Northeast Ohio who have been diagnosed with breast or prostate cancer within the last decade and have internet access plus an email. It's not specified who can't join, but typically those not meeting the inclusion criteria would be excluded.

Inclusion Criteria

Have access to the internet with a working email address

I was diagnosed with breast or prostate cancer in the last 10 years.

You live in Northeast Ohio.

Timeline

Screening

Participants are screened for eligibility to participate in the trial

1-2 weeks

Intervention

Participants complete a cancer screening, diagnosis, and treatment questionnaire, with the intervention group accessing online medical records

1 week

2 visits (virtual)

Follow-up

Participants are monitored for completeness and accuracy of survey responses

1 week

Treatment Details

Interventions

• Accessing personal medical records online via online portals

Trial Overview The study is examining if providing time or other resources helps people better recall their cancer screening and diagnosis details by using online medical records through patient portals.

Participant Groups

Group I: Control Group Active Control 1 Intervention

Survey questions at baseline and at one week. The control group will have had one week to reflect on the questions, and investigators anticipate some influence of this on responses.

Group II: Intervention Group Active Control 1 Intervention

The intervention group will be prompted about accessing their medical records from the major local health systems online, with links to directions provided by each hospital system. They will then be asked to fill out the same questionnaire.

Who Is Running the Clinical Trial?

Case Comprehensive Cancer Center

Lead Sponsor

Trials

472

Recruited

33,400+

Findings from Research

Online access to computerized medical records for patients with type 2 diabetes has been associated with improved glycemic control, indicating its efficacy in managing diabetes, although blood pressure outcomes were mixed.

Despite the benefits, disparities in access and usage were noted, particularly among younger men in full-time employment, suggesting that while the system is generally safe and beneficial, it may inadvertently widen gaps in healthcare access among different demographic groups.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

The Impact of Patient Online Access to Computerized Medical Records and Services on Type 2 Diabetes: Systematic Review. Mold, F., Raleigh, M., Alharbi, NS., et al.[2020]

The study developed a hierarchical data model for patient secure messages based on the FHIR standard, analyzing over 2 million messages from the Mayo Clinic to identify key medical concepts, which can enhance patient-centered care.

The model revealed that the majority of patient messages focused on clinical concepts, particularly conditions and medications, and it sets the stage for future natural language processing applications to improve communication and reduce clinician workload.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Analyzing Patient Secure Messages Using a Fast Health Care Interoperability Resources (FIHR)-Based Data Model: Development and Topic Modeling Study. De, A., Huang, M., Feng, T., et al.[2021]

Patients with chronic inflammatory bowel disease (IBD) value online access to electronic medical records (EMR) when it promotes a sense of ownership over their illness and facilitates patient-driven communication, personalized support, and mutual trust.

Simply providing access to EMRs is not enough; effective technology must be integrated into existing health and psychosocial support systems to truly enhance patient care and health outcomes.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

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. Winkelman, WJ., Leonard, KJ., Rossos, PG.[2018]

In a survey of 1824 patients with chronic conditions, those who used a health portal found it convenient (90%), useful (92%), and well-integrated with their healthcare, with 31% reporting improvements in their overall health due to portal use.

Nonusers of the portal cited preferences for in-person care (54%) and internet access barriers (41%), highlighting the need to address these issues to increase portal utilization among patients.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Portal Use Among Patients With Chronic Conditions: Patient-reported Care Experiences. Reed, ME., Huang, J., Millman, A., et al.[2020]

A study involving 2402 Dutch adults found that users of online access to medical records felt more empowered in their healthcare, improved their relationship with their general practitioner, and supported informed decision-making compared to nonusers.

While the perceived benefits of online access were present, the effect sizes were small, suggesting that while there is potential for empowerment, the impact may grow over time and could be influenced by factors like the attitudes of healthcare providers.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

The Effects of Online Access to General Practice Medical Records Perceived by Patients: Longitudinal Survey Study. Thielmann, RRLC., Hoving, C., Cals, JWL., et al.[2023]

Patients and caregivers expressed a strong preference for accessing all types of abnormal test results through patient portals, highlighting the importance of transparency in health information.

Concerns were raised about the need for more timely notifications and better interpretation of test results, indicating that improving patient understanding and management of this information could enhance engagement and safety in follow-up care.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

The patient portal and abnormal test results: An exploratory study of patient experiences. Giardina, TD., Modi, V., Parrish, DE., et al.[2020]

Online access to medical records allows patients to personalize their healthcare experience, leading to greater satisfaction when they receive timely responses from clinicians.

However, this access raises concerns for health professionals regarding increased workload, privacy risks, and the need for a sustainable business model to support these online services while ensuring quality and safety in healthcare.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Patients' Online Access to Their Primary Care Electronic Health Records and Linked Online Services: Implications for Research and Practice. Mold, F., de Lusignan, S.[2020]

In a study analyzing 6 months of diagnostic test results from a state academic medical center, it was found that outpatient patients had the highest access rates to their test results, with about 30% viewing their results, especially among females and those aged 20-45.

Approximately 20% of outpatient laboratory results were accessed by patients within 8 hours of being released to the electronic health record (EHR) portal, indicating a relatively quick engagement with their health information.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Variation in Results Release and Patient Portal Access to Diagnostic Test Results at an Academic Medical Center. Krasowski, MD., Grieme, CV., Cassady, B., et al.[2022]

A consensus among 37 experts indicates that providing patients online access to their computerized medical records (CMRs) enhances efficiency in healthcare processes, such as bookings and prescription management, ultimately improving the quality of medical records.

While experts agree on the benefits of online access, there is uncertainty regarding the best type of data access for patients (complete vs. summary records) and concerns about the security measures needed to protect sensitive information.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Benefit-risk of Patients' Online Access to their Medical Records: Consensus Exercise of an International Expert Group. Liyanage, H., Liaw, ST., Konstantara, E., et al.[2020]

The Patient Clinical Information System (PatCIS) allowed 13 patients to access and manage their medical records over a 19-month period, leading to increased understanding of their health conditions and improved communication with their healthcare providers.

Patients primarily used the system to review lab results, with usage frequency varying widely, but importantly, no adverse events were reported during the study, indicating the system's safety.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

What do patients do with access to their medical records? Cimino, JJ., Patel, VL., Kushniruk, AW.[2018]

Cancer patients generally have positive attitudes towards accessing their online medical records, finding it helpful for preparing for doctor visits and understanding their health issues.

Contrary to concerns from healthcare providers, allowing patients online access to their medical records did not lead to increased anxiety or a rise in hospital inquiries.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Cancer patients' attitudes and experiences of online access to their electronic medical records: A qualitative study. Rexhepi, H., Åhlfeldt, RM., Cajander, Å., et al.[2019]

Black and Hispanic individuals were significantly less likely to be offered access to patient portals compared to White individuals, with a 5.2 percentage-point difference in offers and a 7.9 percentage-point difference in access among those offered.

Provider encouragement to use patient portals greatly increased access, with those encouraged being 21 percentage-points more likely to access their portal, highlighting the critical role of healthcare providers in facilitating electronic health information access.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Disparities in patient portal access and the role of providers in encouraging access and use. Richwine, C., Johnson, C., Patel, V.[2023]

References

1. Canada pubmed.ncbi.nlm.nih.gov

The Impact of Patient Online Access to Computerized Medical Records and Services on Type 2 Diabetes: Systematic Review. [2020]

2. Canada pubmed.ncbi.nlm.nih.gov

Analyzing Patient Secure Messages Using a Fast Health Care Interoperability Resources (FIHR)-Based Data Model: Development and Topic Modeling Study. [2021]

3. England pubmed.ncbi.nlm.nih.gov

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. [2018]

4. United States pubmed.ncbi.nlm.nih.gov

Portal Use Among Patients With Chronic Conditions: Patient-reported Care Experiences. [2020]

5. Canada pubmed.ncbi.nlm.nih.gov

The Effects of Online Access to General Practice Medical Records Perceived by Patients: Longitudinal Survey Study. [2023]

6. United States pubmed.ncbi.nlm.nih.gov

The patient portal and abnormal test results: An exploratory study of patient experiences. [2020]

7. Switzerland pubmed.ncbi.nlm.nih.gov

Patients' Online Access to Their Primary Care Electronic Health Records and Linked Online Services: Implications for Research and Practice. [2020]

8. United States pubmed.ncbi.nlm.nih.gov

Variation in Results Release and Patient Portal Access to Diagnostic Test Results at an Academic Medical Center. [2022]

9. Germany pubmed.ncbi.nlm.nih.gov

Benefit-risk of Patients' Online Access to their Medical Records: Consensus Exercise of an International Expert Group. [2020]

10. Netherlands pubmed.ncbi.nlm.nih.gov

What do patients do with access to their medical records? [2018]

11. England pubmed.ncbi.nlm.nih.gov

Cancer patients' attitudes and experiences of online access to their electronic medical records: A qualitative study. [2019]

12. England pubmed.ncbi.nlm.nih.gov

Disparities in patient portal access and the role of providers in encouraging access and use. [2023]