1. What is the decision or change (e.g., clinical topic, practice guideline, system design, delivery of care) you are facing or struggling with where a summary of the evidence would be helpful?
Electronic health records (EHR) or related electronic tools should be used for survivors of childhood cancer. EHRs are a critical component of survivorship care planning and are used to inform the patient, caregivers, and the primary care physicians. AHRQ should help develop best practices for the use of EHR tools to collect the information needed for the successful transition from oncology to primary care and require health systems to share EHRs so the information is complete. Providing comprehensive summaries will inform health professionals and streamline care coordination as patients move through the continuum of care.
If passed, the Childhood Cancer STAR Reauthorization Act (S. 4120/ HR. 7630) would require that the Office of the National Coordinator for Health Information at the Department of Health and Human Services “prepare a report on the role that tailored survivorship electronic health records can play in life-long health care for childhood cancer survivors, with a special focus on survivors who face unique lifelong health needs and late effects as they transition to primary care.”
AHRQ could supplement this report, if passed. If the STAR Act is not reauthorized this year, the AHRQ effort would lead the way to help these affected populations by studying best practices for EHRs with childhood survivors of cancer.
2. Why are you struggling with this issue?
Children are living longer with cancer, resulting in more than 500,000 childhood cancer survivors in the United States. Despite these important advances, pediatric cancer survivors face numerous, complex health issues over their lifetime. However, primary care physicians (pediatricians, internists, family medicine physicians, osteopaths, etc.) often are not knowledgeable about the consequences of cancer and its treatment. An additional challenge is the survivors seldom receive explicit guidance – a survivorship care plan – from oncologists on how to treat cancer survivors. Patients are generally not educated about ongoing and future needs and thus lack the information to antici pate and manage their survivorship care. Often there is no formal transition from the oncologist to a primary care physician, and there is minimal care coordination even when follow-up occurs.
In 2020 the GAO found that lack of knowledge was among the key reasons survivors did not receive appropriate follow-up care. The GAO also pointed to a study that suggests “receiving reminders about needed care can increase survivors’ adherence to appointments.” (1) EHRs can automate these reminders to survivors and help them receive the care they need.
Better use of electronic health records for survivorship care planning could be a lifesaving component of the solution as survivors transition into adult primary care.
1. https://www.gao.gov/products/gao-20-636r
3. What do you want to see changed? How will you know that your issue is improving or has been addressed?
Establishing best practices for survivorship care planning and the use of electronic health records as a transition tool will help improve the implementation of survivorship care services and minimize variation in care. Systems like Passport for Care (2) uses the Children’s Oncology Group (COG) guidelines to provide information on the type and scope of cancer treatments to the survivor in a secured database. Passport uses an algorithm then generates risks for late effects and recommendations for screenings. This information can be shared with care providers electronically.
Our issue will be addressed when AHRQ and/or a comparable entity develops best practices for standardized survivorship care plan EHRs and related tools which are widely used by providers, patients, and their families.
2. https://www.passportforcare.org/en/
4. When do you need the evidence report?
Sunday, 12/31/2023
5. What will you do with the evidence report?
The AHRQ evidence report will provide evidence and best practices to encourage and increase the use of EHRs and other electronic tools in survivorship care planning for children and adolescents moving from active oncological care to primary or pediatric care.
Supporting Documentation Upload Document
Additional explanation for report date request: EHR to Help Childhood Cancer Survivors
Optional Information About You
What is your role or perspective? Professional Society
If you are you making a suggestion on behalf of an organization, please state the name of the organization. Children’s Cancer Cause
May we contact you if we have questions about your nomination? Yes
