Enhancing Cancer Surveillance: Feasibility of Patient-Generated Data Portal by Statewide Registry

1. Feasibility of using a patient portal distributed by the statewide cancer registry to collect patient generated health data Mary Charlton, PhD Iowa Cancer Registry University of Iowa college of public health, Department of epidemiology Study pi: betsy Chrischilles, phd

2. PATIENT-GENERATED HEALTH DATA (PGHD) • Patient-reported data for cancer surveillance research can fill gaps in current registry surveillance, e.g.: • Symptoms • Survivorship care • Financial well-being • Cancer recurrence • Quality of life • Cancer treatments

3. PATIENT-GENERATED HEALTH DATA (PGHD) • SEER issued a Rapid Response Surveillance Study (RRSS) in 2016 to determine the feasibility of collecting PGHD to complement traditional registry data • Years before the RRSS, the Iowa Personal Health Record (PHR) (web and mobile) was developed using human-centered participatory design methods with 128 older adults as design partners - It has since been used in multiple studies, and results of focus groups have indicated: • Patients desire an interface that is highly usable by older adults • Patients want to keep track of information and receive feedback

4. MAIN RESEARCH QUESTIONS • Short term: What is the feasibility of having patients log into an online portal to provide information about their cancer treatment and survivorship experience? • Long term: Can patient-generated health data enhance cancer surveillance activities?

5. STUDY AIMS • Implement the Iowa PHR portal to obtain patient-generated health data to complement traditional registry data • Investigate the feasibility of collecting patient-generated data longitudinally by administering a follow-up survey through the PHR portal • Provide value back to patients through printable medication lists, health tracking, and information about symptom management • Assess the patient experience with a usability assessment and analysis of web logs to identify the features used most by patients

6. STUDY DESIGNONWARD: ONlineWay for patients to Augment Registry Data • Prospective observational cohort study (N=2,363) • Iowa adults age 50+ diagnosed with invasive breast, prostate or colorectal cancer in 2015 • Mailed invitation packet with unique credentials to access the online tool (Iowa PHR) • Follow up mailing to non-responders • Phone calls to assess reasons for non-response (N=70) • Website included access to reports, health tracking (e.g., meds, conditions, etc.), cancer care materials • Two online assessments ~4 months apart • Subjects were offered $10 for completing each survey Brochure included with study packet

7. SAMPLING STRATEGY - Stratified by cancer type * age group - Oversampled minorities

8. Measures Assessed

9. PHR home page after completion of baseline survey

10. Symptom Action Decks

11. ENROLLMENT PROCESS • Online consent • When participants first logged on, a consent form appeared which they must read and then click either ‘I Agree’ or ‘ No Thanks’ • Directly following consent subjects were asked to confirm their cancer type • Invited to complete the baseline survey

12. RESULTS

13. Overall response rate: 17% Selected Enrollment Events by Cancer Type and Age Group

14. Survey #2 status among subjects who completed Survey #1 (N = 395)

15. MOST FREQUENT REASONS FOR NON-RESPONSE • Among n=18 patients who were reached and answered questions

16. RESPONDENTS VS. NON-RESPONDENTS

17. SURVEY #1 – PATIENT REPORTEDRECURRENCE

18. USER ENGAGEMENT WITH PHR • Majority of patients (83%) engaged with the system twice • On those days the average number of items clicked was 6 and average minutes spent was 25 • In addition to the home page, 70% viewed >1 other page • >1 report was viewed by 41% with 21% viewing survey #1 results and 9% viewing survey #2 results

19. USER ENGAGEMENT WITH PHR

20. USEFULNESS OF PHR

21. USEFULNESS OF PHR

22. CONCLUSIONS • Our approach to collect PGHD is highly replicable and readily scalable for future research or cancer surveillance efforts • Overall participation was low, but retention was high • Younger patient populations and breast cancer patients are likely to be better represented in this approach • The ability to recruit via email instead of mail could enhance feasibility

23. RECOMMENDATIONS FOR FUTURE REGISTRY BASED RECRUITMENT & DATA COLLECTION • Assess possibility of collecting patient email addresses • Include up front monetary incentives when possible • Leverage REDCap as case management and data sharing tool • Optimize response rates and scalability by examining multiple contact, data collection, and patient feedback modalities

24. ONWARD STUDY TEAM • Principal Investigator: Betsy Chrischilles, Professor and Chair, Department of Epidemiology • Co-Investigator: Mary Charlton, Assistant Professor and Associate Director, Iowa Cancer Registry • Project Manager: Brian Gryzlak • Iowa Cancer Registry Staff • - Michele West • - Jason Brubaker • Students • - Natalie Del Vecchio • - Seyedehtanaz Saeidzadeh • - Seamus Taylor • - Amy Bohner

25. Thank you