Αρχική World News People with Cancer Say Access to Their Clinical Notes Is Valuable

People with Cancer Say Access to Their Clinical Notes Is Valuable

, by NCI Staff

A new federal rule mandates that all patients have electronic access to the clinical notes from their doctors’ visits by April 2021.

Credit: iStock

People with cancer believe that having access to electronic clinical notes that summarize their doctor visits is valuable, researchers have found. Oncologists and other care providers agree that patient access to these open notes is important, although their views tend to differ somewhat from those of patients, according to survey results.

Doctors, nurses, and other health care providers create these notes for patients’ electronic medical records to document important information, including conversations with patients. The notes may include test results, diagnoses, and treatment options.

In recent years, a growing number of hospitals and health care systems have granted patients access to these notes, which are known as “open notes” once they have been made available to a patient. A new federal rule required by the 21st Century Cures Act mandates that all patients have access to their clinical notes by April 2021. [See Box.]

In a new analysis of data from several Web-based surveys of clinicians and patients, 70% of the clinicians who treat cancer thought that giving patients access to clinical notes was a good idea, while 98% of the patients with cancer held this view. The findings were reported in Cancer Cell on October 8. 

Patients were also much more likely than clinicians to report that access to their clinical notes could have important benefits, such as helping them be more prepared for their appointments, the researchers found. 

The nearly unanimous approval by the patients with cancer surveyed is consistent with the views of other patients in prior surveys, according to study investigator Liz Salmi of Beth Israel Deaconess Medical Center. 

“Not all patients will read their notes, but they like having the option,” said Salmi, who, along with several other members of the study team, is part of the OpenNotes project. The project, which was started by health professionals at Beth Israel Deaconess Medical Center and Harvard Medical School in 2010, promotes patient access to clinical notes and conducts research on the effects of sharing these notes on communication among patients, families, and clinicians. 

“The difference in views of some of the clinicians and the patients with cancer is not surprising,” said Gurvaneet Randhawa, M.D., M.P.H., of the Healthcare Delivery Research Program in NCI’s Division of Cancer Control and Population Sciences (DCCPS), who was not involved in the study.  
 
“Asking a clinician to share their notes with the patient is a relatively new practice and goes against traditional practice,” said Dr. Randhawa. “As a result, one might expect that some clinicians would be less enthusiastic about sharing their notes with the patients.”  

But many patients believe that being able to review clinical notes can help them to better understand their care, according to the researchers. 

“Many people are nervous going to the doctor, and it can be difficult to remember what the doctor said during a particular visit, especially when you’re getting bad news,” said Salmi, who is herself a survivor of brain cancer. “For patients who do not take notes during a doctor visit or are feeling overwhelmed, clinical notes can be meaningful.” 

Focusing on Patients with Cancer and Their Clinicians 

In recent years, more than 250 health systems in the United States have begun to share clinical notes with patients, according to the OpenNotes database.

Patients who have read their notes have told researchers that they had a better understanding of their health and medical conditions, were better prepared for their visits, took better care of themselves, and were more likely to take their medications as prescribed.

Previous studies have shown differences in the attitudes of patients and clinicians overall after open notes have been implemented, but little has been known about the views of patients with cancer and their clinicians specifically. 

In fact, the decision to undertake the current analysis was based, in part, on responses that Salmi and her colleagues have received from oncologists during presentations on open notes at professional meetings. 

“When we have presented to audiences of patients, they have been very positive about the idea of having access to more information in their records, but oncologists as a group have expressed more hesitation,” Salmi said. 

“With the new study, we wanted to see if we could learn more about this disconnect or where their views align,” she continued. 

To explore this question, the researchers analyzed data from two online surveys of clinicians and patients at three health systems—in Boston, Seattle, and rural Pennsylvania—in which notes from clinicians across all outpatient specialties had been shared for at least 4 years. 

The analysis included responses from 96 clinicians (including nearly 50 physicians) who worked in the field of oncology and from approximately 3,400 patients with cancer. 

Clinicians participating in the study had written at least one note that had been opened by a patient in the year prior to the survey. The majority of patients were older than 65, white, female, had more than a high school education, and spoke English as their primary language.

Addressing Concerns among Clinicians

Patients in the analysis were much more likely than clinicians to think that open notes could have important benefits. For example, 28% of the clinicians agreed or somewhat agreed that notes could help patients be more prepared for their visits, whereas 56% of the patients with cancer viewed open notes as important for preparing.

Some of the questions in the survey addressed known concerns among clinicians, such as concerns about patients not understanding the notes, which are not written for lay readers and may include technical language. 

But whereas 44% of the clinicians said that patients with cancer would be confused by notes, only 4% of the patients reported feeling confused after reading their notes. 

There may be legitimate concerns among clinicians about patients not understanding the notes, said Dr. Randhawa. “One solution is to write notes in plainer language. Alternatively, we need to provide patients with digital tools that make better sense of the notes,” he added.

Another common concern among clinicians has been that patients who read their notes will have questions that require time-consuming responses, said Salmi. But this concern was not borne out by the survey results. Just 23% of patients with cancer said they had contacted their doctor’s office about something in their notes in the last 12 months, and 89% of oncology clinicians reported that such contacts were infrequent (40% were never contacted, and 49% were contacted less than once per month).

Better Communication Needed

The new study addresses one part of a broader need for better communication, education, and support of patients with cancer and their caregivers, according to Dr. Randhawa.

“This is particularly important for someone who is newly diagnosed with cancer and may not fully understand—or be able to absorb—a large amount of information about their disease,” he said.

A diagnosis of cancer and treatment for the disease “is often overwhelming for patients,” Dr. Randhawa continued. “Better communication by giving patients access to their clinical notes is helpful but by itself is not sufficient.”

An additional need, Dr. Randhawa continued, is to make the cancer care patient-centered. “You have to understand the patient’s care goals and needs, which may change over time, and then use the knowledge to design a care plan,” he said.

“This requires good communication between the patient and the oncology care team and adapting the care plan based on the patient’s wishes,” he added. “It also means there should be shared decision making between the patient and provider.”
 
Previous research from the OpenNotes project suggests that open notes can help to strengthen the relationship between patient and clinician, according to Salmi. “We’ve found that there’s something about the offer of being transparent that increases the trust of patients in their clinicians,” she said. 

Source

NEWSLETTER

Συμπληρώστε το email σας για να λαμβάνετε τις σημαντικότερες ειδήσεις από το ogkologos.com

Βρείτε μας

2,449ΥποστηρικτέςΚάντε Like
57ΑκόλουθοιΑκολουθήστε

Διαβαστε Επίσης

ΕΞΕΛΙΞΕΙΣ ΣΤΗ ΘΕΡΑΠΕΙΑ ΤΟΥ ΜΗ-ΜΙΚΡΟΚΥΤΤΑΡΙΚΟΥ ΚΑΡΚΙΝΟΥ ΤΟΥ ΠΝΕΥΜΟΝΑ (ΜΜΚΠ)

ΕΞΕΛΙΞΕΙΣ ΣΤΗ ΘΕΡΑΠΕΙΑ ΤΟΥ ΜΗ-ΜΙΚΡΟΚΥΤΤΑΡΙΚΟΥ ΚΑΡΚΙΝΟΥ ΤΟΥ ΠΝΕΥΜΟΝΑ (ΜΜΚΠ) Γράφει ο Δρ Παπαδούρης Σάββας, Παθόλογος-Ογκολόγος   Ο ΜΜΚΠ βρίσκεται αναλογικά στο 80% και πλέον του συνολικού...

Διατρέχουν όντως οι καρκινοπαθείς μεγαλύτερο κίνδυνο λόγω κοροναϊού;

Σε πρακτικό επίπεδο, τα δεδομένα των σχετικών μελετών υποδηλώνουν ότι η χημειοθεραπεία ή οι άλλες αντι-νεοπλασματικές θεραπείες δεν αυξάνουν σημαντικά τον κίνδυνο θνησιμότητας από...

FDA: Η ακτινοβολία των smartphones δεν προκαλεί καρκίνο

Σε μια νέα έκθεσή της, η Υπηρεσία Τροφίμων και Φαρμάκων (FDA) των ΗΠΑ αναφέρει ότι επανεξέτασε τις σχετικές επιστημονικές έρευνες που δημοσιεύθηκαν τα τελευταία...

Νέα ανακάλυψη, νέα ελπίδα για τον καρκίνο

Ένα νεοανακαλυφθέν τμήμα του ανοσοποιητικού μας συστήματος θα μπορούσε να αξιοποιηθεί για την αντιμετώπιση όλων των ειδών καρκίνου, σύμφωνα με επιστήμονες του πανεπιστημίου Cardiff...

Καρκίνος: Ευεργετική για τους καρκινοπαθείς η άσκηση

Σημαντικά ωφέλη προσφέρει η άσκηση, ακόμη και σε ασθενείς με καρκίνο. Οι περισσότεροι ασθενείς αγνοούν τα οφέλη που μπορεί να έχει γι’ αυτούς η συχνή...

Prostate Cancer

The article is provided by Scientific Communications Officer of NIPD Genetics, Ms Marina Charitou (MSc) Prostate Cancer Awareness Prostate cancer is the second most common cancer...
- Advertisment -

Ροή Ειδήσεων

FDA Grants Accelerated Approval to Naxitamab for High-Risk Neuroblastoma in Bone or Bone Marrow

On 24 November 2020, the US Food and Drug Administration (FDA) granted accelerated approval to naxitamab (DANYELZA, Y-mAbs Therapeutics, Inc.) in combination with granulocyte-macrophage...

Genetic Cancer Screenings in Younger Women May Be Cost-Effective and Lead to Fewer Cases

Many women may wonder if they have genetic mutations that make them more apt to develop breast and ovarian cancers. Is it worth it...

After Battling Breast Cancer and Infertility, Mom Welcomes Miracle Baby

At 31-years-old, and during the week of her daughter’s first birthday, Gemma Isaacs received shocking news. Not only did her doctor confirm that she...

“Selfless and Incredible” Mother Leaves Behind Five Children After Battling Breast Cancer

Hollie Jobber spent her life protecting and caring for children, both her own and those most in need. The 35-year-old mother of five worked...

Spending Review 2020 – Steps in the right direction, but opportunities missed

Today, the Chancellor Rishi Sunak set out the UK Government’s spending priorities for the next year. It was an opportunity to lay the groundwork for...

Coping With the Holidays During COVID-19 and Cancer

As we prepare for the holidays this year, we face a new challenge that forces us to rethink plans and possibly even cancel them....