SurvivorLink: Scalability of an Electronic Personal Health Record

SurvivorLink: Scalability of an Electronic Personal Health Record for Cancer Survivors and Caregivers at Pediatric Cancer Centers

Previous research suggests that children and adolescents with cancer are at heightened risk of late effects that can occur months or years after cancer treatment, yet little is known about programs that increase their return for follow-up cancer care and late effects surveillance. This study will evaluate the impact of an electronic personal health record and education system, SurvivorLink, for pediatric cancer survivors and their caregivers. The researchers will develop a standardized intervention and training for the SurvivorLink trial, followed by conducting a Hybrid Type 1 effectiveness-implementation, clustered randomized, waitlist control trial to evaluate the impact of SurvivorLink on pediatric cancer patients' one year follow-up visits and completion of screening tests. The study will also assess the impact of SurvivorLink on caregiver's patient activation, survivor's and caregiver's quality of life, and self-efficacy to manage a chronic condition. This study will provide the evidence base about the effects of the system to improve follow-up care for children and adolescents with cancer and best practices for implementation for pediatric cancer centers.

Currently, there are over 388,000 cancer survivors who are diagnosed under the age of 21. Individuals who have survived a diagnosis of cancer exemplify a complex patient population who would benefit from incorporation of an ePHR (electronic personal health record) into their chronic disease management care. Survivor care is especially important for survivors of pediatric cancers, where the overall cure rate is over 80%. To aid in the timely and appropriate surveillance of pediatric cancer survivors, the Children's Oncology Group (COG) developed Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent and Young Adult Cancers (LTFU Guidelines). The LTFU Guidelines can be used to create a Survivorship Care Plan (SCP) for each survivor which supplies an individualized, evidence-based roadmap for survivor care and surveillance. The Institute of Medicine (IOM) recommends all cancer patients should receive a SCP; however, scant research has explored how interventions which provide summary care documents have impacted a survivor's utilization of health care, and adherence to healthy behaviors and surveillance guidelines.

The researcher developed SurvivorLink in 2010 as a HIPAA compliant web-based communication tool to enable survivors to learn about survivorship care, store their SCP and other important health documents, and share their SCP and other health documents with their various healthcare providers. SurvivorLink is a completely patient-controlled electronic personal health record (PHR) - parents of survivors <18 years old and survivors ≥18 years must register and create their own heath record. Once the registrant creates their health record, they can upload and store their important health documents and electronically share their health record with their providers regardless of where they practice. Patients can also select the clinic where they receive their survivor care and complete the medical record process to allow their clinic to upload documents to their health record. Currently, Children's Healthcare of Atlanta (CHOA) is the only survivor clinic with this functionality available. However, SurvivorLink was built with the capability to easily add additional clinics.

In this study, the researchers plan to perform the implementation process of adding additional clinics with their own clinical portals to SurvivorLink. The addition will allow the clinics to recruit their patients to use SurvivorLink. Each survivor clinic will be able to independently manage their own patient users and medical record releases. The overall goal of this research is to contribute to literature about technological interventions that impact supportive and long-term care for pediatric cancer survivors and advance conceptual thinking about context impacts on implementation.

Interventions for caregivers and pediatric cancer survivors are needed to improve patient-centered care, minimize late effects and promote overall well-being. The purpose of this research is to assess the impact of the SurvivorLink system on implementation and adherence to cancer care and late effects visits/screening. This research projects proposes to develop a standardized process by which to implement SurvivorLink, a personal electronic health record and education system, designed to promote survivor care, within pediatric cancer clinics. This study will use a Hybrid Type 1 effectiveness-implementation, clustered randomized, waitlist control design to evaluate the impact of SurvivorLink on patient health behavior and quality of life outcomes and understand its delivery among 20 pediatric cancer survivor clinics. The researchers will test the effectiveness of SurvivorLink on 1 year follow-up and completed screenings through a clustered randomized waitlist-control trial: ten clinics will administer the intervention to study participants and the other ten clinics will be a wait-list control group where study participants receive usual care.

The study will evaluate the impact of SurvivorLink on patient survivor care visit attendance and risk-based surveillance tests, caregiver's patient activation, survivor's and caregiver's quality of life and self-efficacy to manage a chronic condition. This study is the first comprehensive, effectiveness-implementation study to evaluate the impact of an electronic personal health record (with care plan) and education system for pediatric cancer survivors and their caregivers.

Inclusion Criteria for Pediatric Cancer Survivor Clinics:

• have a designated survivorship clinic and provide a survivor healthcare plan (SHP) to survivors seen in clinic
• have > 100 pediatric cancer survivors seen annually
• be willing to become a SurvivorLink partner clinic and complete a Business Associates Agreement with Emory University
• able to enroll 75 caregivers or young adult patients

Inclusion Criteria for Caregivers of Survivors under 18 Years of Age, Adolescent Survivors Aged 15-17, and Survivors Aged 18-21:

• pediatric cancer survivor completed treatment in past year
• English or Spanish speaking
• able to access the internet either with a computer or smartphone
• gives permission for the clinic and study staff to use clinical data to confirm service utilization patterns
• gives permission to view SHP records on SurvivorLink

Exclusion Criteria for Caregivers of Survivors under 18 Years of Age, Adolescent Survivors Aged 15-17, and Survivors Aged 18-21:

• survivor has a terminal illness