User-centered design and enhancement of an electronic personal health record to support survivors of pediatric cancers.

PURPOSE: The objective of this article is to demonstrate how user-centered design theory and methods can be employed to develop and iteratively improve technologies to support survivors of childhood cancer. METHODS: Focus groups and structured interviews with young adult survivors of pediatric cancer (N = 3), parents (N = 11), and healthcare providers (N = 14) were conducted to understand their needs as potential users and the contexts in which they would use an electronic personal health record (PHR) for survivors, Cancer SurvivorLinkTM (https://cancersurvivorlink.org/). Usability evaluations were conducted to assess the functionality of the PHR using think aloud protocol with survivors/parents (N = 4) and focus groups with providers (N = 12). RESULTS: Major themes identified through the needs assessment guided design of the PHR, including (1) education about the lifelong healthcare needs of pediatric cancer survivors ("Learn"), (2) secure electronic storage for healthcare documents to direct long-term follow-up care ("Store"), and (3) communication functionality to allow sharing of health documents with healthcare providers ("Share"). Usability evaluations identified challenges with the PHR design, which informed site enhancements to improve PHR usefulness and ease of use including a registration wizard and healthcare provider directory. CONCLUSIONS: User-centered design methods informed iterative enhancements to an untethered, patient-controlled PHR to address usability barriers and meet the self-identified needs of survivors of childhood cancer and their providers.

Meaningful Use of an Electronic Personal Health Record (ePHR) among Pediatric Cancer Survivors.

Background and Objectivs: Survivors of pediatric and adolescent cancer are at an increased risk of chronic and debilitating health conditions and require life-long specialized care. Stand-alone electronic personal health records (ePHRs) may aid their self-management. This analysis characterizes young adult survivors and parents who meaningfully use an ePHR, Cancer SurvivorLinkTM, designed for survivors of pediatric and adolescent cancer. METHODS: This was a retrospective observational study of patients seen at a pediatric survivor clinic for annual survivor care. Young adult survivors and/or parent proxies for survivors <18 years old who completed ePHR registration prior to their appointment or within 90 days were classified as registrants. Registrants who uploaded or downloaded a document and/or shared their record were classified as meaningful users. RESULTS: Overall, 23.7% (148/624) of survivors/parents registered and 38% of registrants used SurvivorLink meaningfully. Young adult registrants who transferred to adult care during the study period were more likely to be meaningful users (aOR: 2.6 (95% CI: 1.1, 6.1)) and used the ePHR twice as frequently as those who continued to receive care in our institution's pediatric survivor clinic. Among survivors who continued to receive care at our institution, being a registrant was associated with having an annual follow-up visit (aOR: 2.6 (95% CI: 1.2, 5.8)). CONCLUSIONS: While ePHRs may not be utilized by all survivors, SurvivorLink is a resource for a subset and may serve as an important bridge for patients who transfer their care. Using SurvivorLink was also associated with receiving recommended annual survivor care.

Predictors of successful use of a web-based healthcare document storage and sharing system for pediatric cancer survivors: Cancer SurvivorLink™.

PURPOSE: Cancer SurvivorLink™, www.cancersurvivorlink.org , is a patient-controlled communication tool where survivors can electronically store and share documents with healthcare providers. Functionally, SurvivorLink serves as an electronic personal health record-a record of health-related information managed and controlled by the survivor. Recruitment methods to increase registration and the characteristics of registrants who completed each step of using SurvivorLink are described. METHODS: Pediatric cancer survivors were recruited via mailings, survivor clinic, and community events. Recruitment method and Aflac Survivor Clinic attendance was determined for each registrant. Registration date, registrant type (parent vs. survivor), zip code, creation of a personal health record in SurvivorLink, storage of documents, and document sharing were measured. Logistic regression was used to determine the characteristics that predicted creation of a health record and storage of documents. RESULTS: To date, 275 survivors/parents have completed registration: 63 were recruited via mailing, 99 from clinic, 56 from community events, and 57 via other methods. Overall, 66.9 % registrants created a personal health record and 45.7 % of those stored a health document. There were no significant predictors for creating a personal health record. Attending a survivor clinic was the strongest predictor of document storage (p < 0.01). Of those with a document stored, 21.4 % shared with a provider. CONCLUSIONS: Having attended survivor clinic is the biggest predictor of registering and using SurvivorLink. IMPLICATIONS FOR CANCER SURVIVORS: Many survivors must advocate for their survivorship care. Survivor Link provides educational material and supports the dissemination of survivor-specific follow-up recommendations to facilitate shared clinical care decision making.

Primary care providers as partners in long-term follow-up of pediatric cancer survivors.

PURPOSE: To develop a model of shared healthcare delivery that includes primary care providers (PCP) and ensures best practice in follow-up of pediatric cancer survivors. METHOD: Structured interviews with healthcare professionals (HCPs) were used to ascertain familiarity and confidence in providing care to survivors. Partnerships were made with HCP societies, and survivor care lectures were given at HCP meetings. HCP's preferences for ongoing continuing education (CE) opportunities were ascertained. Cancer SurvivorLink(TM), a web-based tool, was developed to allow patients to securely store their healthcare documents and share them electronically with registered HCPs. Educational material developed for Cancer SurvivorLink(TM) includes CE modules and QuickFacts--concise summaries of late effects. Website utilization was monitored utilizing Google Analytics. RESULTS: HCPs described moderate to very low familiarity with survivor care, but high interest in online CE learning. Thirty-one lectures were given to HCP groups to increase awareness. Preferred types of ongoing CE were: lectures, online text, and video modules. CE material was developed based on feedback from HCPs and website utilizations and includes 19 QuickFacts and 5 CE modules. During the first year, the website had 471 unique visitors and 1,129 total visits. QuickFacts received 345 views with Neurocognitive, Survivor Care 101, and Endocrine being most visited, and 49 CME modules have been completed. CONCLUSIONS: PCPs are interested in partnering in models of shared care for pediatric cancer survivors. Effective educational initiatives include lectures within HCP's professional education constructs and web-based CE opportunities. PCP involvement in survivor care alleviates some barriers to care such as geographic distance to the the cancer center and ensures that more pediatric cancer survivors receive recommended coordinated surveillance for late effects of cancer therapy.