Understanding the Cures Act Information Blocking Rule in cancer care - a mixed methods exploration of patient and clinician perspectives and recommendations for policy makers

Sep 24, 2026

The 21st Century Cures Act Interoperability and Information Blocking Rule aims to increase patient access to health information, yet it has received both praise and concern. In cancer care, opinions from patients and clinicians remain insufficiently understood. A convergent parallel mixed-methods design combined interviews and surveys from 29 patients and 29 clinicians, using inductive thematic analysis to capture reactions and policy considerations.

LanguageEnglish

CategoryHealthcare

FormatPDF

Pages13

Reading Time33 min

AccessFree to download

Abstract

Background

Methods

Results

Conclusions

Background

Policy rollout and effects

Cancer-specific concerns and knowledge gap

Brooks et al. BMC Health Services Research (2023) 23:216 [https://doi.org/10.1186/s12913-023-09230-z](https://doi.org/10.1186/s12913-023-09230-z) BMC Health Services Research RESEARCH Open Access Understanding the Cures Act Information Blocking Rule in cancer care: a mixed methods exploration of patient and clinician perspectivesand recommendations for policy makers Joanna Veazey Brooks1, Carli Zegers2, Christian T. Sinclair 1, Elizabeth Wulff‑Burchfield1, Amanda R. Thimmesch2, Daniel English2 and Heather V. Nelson‑Brantley2* Abstract Background The 21st Century Cures Act Interoperability and Information Blocking Rule was created to increase patient access to health information. This federally mandated policy has been met with praise and concern. However, little is known about patient and clinician opinions of this policy within cancer care. Methods We conducted a convergent parallel mixed methods study to understand patient and clinician reactions to the Information Blocking Rule in cancer care and what they would like policy makers to consider. Twenty‑nine patients and 29 clinicians completed interviews and surveys. Inductive thematic analysis was used to analyze the interviews. Interview and survey data were analyzed separately, then linked to generate a full interpretation of the results. Results Overall, patients felt more positive about the policy than clinicians. Patients wanted policy makers to understand that patients are unique, and they want to individualize their preferences for receiving health informa‑ tion with their clinicians. Clinicians highlighted the uniqueness of cancer care, due to the highly sensitive informa‑ tion that is shared. Both patients and clinicians were concerned about the impact on clinician workload and stress. Both expressed an urgent need for tailoring implementation of the policy to avoid unintended harm and distress for patients. Conclusions Our findings provide suggestions for optimizing the implementation of this policy in cancer care. Dissemination strategies to better inform the public about the policy and improve clinician understanding and sup‑ port are recommended. Patients who have serious illness or diagnoses such as cancer and their clinicians should be included when developing and enacting policies that could have a significant impact on their well‑being. Patients with cancer and their cancer care teams want the ability to tailor information release based on individual preferences and goals. Understanding how to tailor implementation of the Information Blocking Rule is essential for retaining its benefits and minimizing unintended harm for patients with cancer. Keywords 21st Century Cures Act, Cancer care, Information Blocking Rule, Open Notes, Patient‑clinician communication, Policy implementation *Correspondence: Heather V. Nelson‑Brantley hnelson‑[brantley@kumc.edu](brantley@kumc.edu) Full list of author information is available at the end of the article © The Author(s) 2023. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit [http://creativecommons.org/licenses/by/4.0/](http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver ()[. The Creative Commons Public

FAQs

What is the main purpose of the 21st Century Cures Act Interoperability and Information Blocking Rule?

It was created to increase patient access to health information, including rapid access to clinical notes and medical test results.

How did the study collect and analyze data from patients and clinicians?

It used a convergent parallel mixed methods approach, with interviews and surveys. Interview and survey data were analyzed separately, then linked to form a full interpretation.

What did patients and clinicians think differently about the policy in cancer care?

Patients generally felt more positive than clinicians. Both groups expressed concerns, including clinician workload and stress, and a need to tailor implementation to avoid unintended harm and distress.

Sep 24, 2026

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