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.
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.
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