History of the Hope Portal

 
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Many thanks to Kathy Ruccione (Clinical Adjunct Professor of Pediatrics, Keck School of Medicine of USC and Associate Professor and Chair, Department of Doctoral Programs, School of Nursing, Azusa Pacific University) for her many years of devoted service dedicated to making the Hope Portal the pre-imminent resource for pediatric oncology patients, families, and health care professionals in the United States and for providing this narrative history of the origins and growth of the Hope Portal.

 

HOPE Resource Center

The HOPE Resource Center (HRC) was founded in 1982 by Kathy Ruccione, PhD, RN, in the Children’s Center for Cancer and Blood Diseases at Children’s Hospital Los Angeles (CHLA).  The program had its roots in one of the very few empiric studies of a pediatric oncology health education intervention (Ruccione 1985), a 2-year randomized trial evaluating a prototype structured parent education/support course, funded by the American Cancer Society,  California Division. This study replicated and extended a non-randomized pilot study conducted at Children’s Orthopedic Hospital and Medical Center (COHMC) in Seattle (Wallace et al.1984). The parent education course was coordinated by an MPH-prepared health educator and taught by health care team members representing various disciplines and subspecialties, using a curriculum guided by parent advisory/health care professional panels at COHMC and CHLA. Study findings showed statistically significant improvements in knowledge, mood state, and coping among parents in the intervention group, with mothers having the most dramatic gains.  Parents endorsed satisfaction with the course content, citing the benefits of being able to interact with health care professionals, and sharing experiences and concerns with other parents. Ultimately, however, cost-benefit analysis showed that the program’s exportability was limited by the intensive staff time required to prepare and conduct the 6-week course for the families who could attend.

Nevertheless, important programmatic lessons were learned. These included recognition of needs for: (1) a clearinghouse for interdisciplinary assessment of the growing number of books, pamphlets, and videos being published; (2) a lending library of vetted educational materials; (3) continued attention to developing new approaches to provide health education and support services to a greater proportion of patients and families, particularly those who were non-English speaking; and (4) securing support to enable continued pediatric oncology nurse-health educator partnership for needs assessment, planning, implementation and evaluation of pediatric hematology-oncology patient/family education and support.  The HRC was formed to address these needs. Given institutional funding constraints, external support was secured through philanthropic and research grants, enabling continuous operation until Dr. Ruccione’s retirement from CHLA in 2015. Among the HRC’s most significant accomplishments was the development of the HOPE Portal.

HOPE Portal

Locating trustworthy information and support resources on the Internet can be challenging and time consuming, particularly when potential users are in crisis or have limited computer literacy. A web portal can help by curating information from various sources in a uniform way. The HOPE Web portal was originally developed at CHLA by Kathy Ruccione and Susan Gantan, MPH (health educator) with implementation assistance from Jacqueline Gilberto, MPH, in the HRC. Early funding support was provided by the Ronald McDonald Children’s Charities (English version 2005, Spanish version 2008) and CHLA. The Portal organized and linked to vetted resources related to childhood or adolescent/young adult cancer and blood diseases. Design and content of the HOPE Portal were determined by working with a parent/interprofessional task force, communications specialists, and web designers. The HRC health educator completed review of more than 300 websites, of which 100 met criteria established by the National Cancer Institute and were active. A link mapping process was created for each website, including direct links to individual pages within sites. A detailed matrix was created, which is the database that contains all the sorting information and details about each of the sites.  The matrix included factors such as the site user, the patient age group, the health topic and the resource type with over 175 direct links.  In some cases, websites listed served multiple purposes and multiple audiences, but were listed separately as specific services offered were not always easily located within the sites themselves. The HOPE Portal provided content ratings of the linked sites according to technical difficulty, incorporated user ratings to increase usefulness to individuals from diverse backgrounds, and made a link accessible that provided guidance on how to use the Internet for novice computer users. The site had the dynamic capacity to continually expand and incorporate additional resources based on community referral and review, as well as maintain the most up-to-date links.  The site allowed any user to send an automated notification should they arrive at a “dead link” so that changed or discontinued links could be identified.

The HOPE Portal received the Association of Pediatric Hematology and Oncology Nurses (APHON) Patient/Family Educational Materials Award in 2008, and three web design awards in 2009 (W3 Awards Gold Website Award for Healthcare Services Website, Web Marketing Association WebAward for Outstanding Website, Global Awards Finalist).  

In 2013, the Coalition Against Childhood Cancer (CAC2) identified a need for centralized reliable web-based information about support resources serving each U.S. state. CAC2 and the HOPE Portal team formed a partnership to address this need, working under a collaborative agreement between CAC2 and CHLA. Together they formulated processes for submitting and vetting regional resources to be posted, including criteria for approval, refined topic categories, volunteer reviewer qualifications and training, and site architecture revision. In the updated version, users could personalize a search for resources based on their role, age, diagnosis, and importantly – geographic location. They could then search by topic (such as financial assistance, fertility, coping, or scholarships) and navigate to search results that had been carefully reviewed and vetted. The enhanced HOPE Portal was prepared for launch in Spring 2015, but was placed on hold with Dr. Ruccione’s retirement from CHLA. Dr. Ruccione (APHON immediate past president), APHON, CAC2, and CHLA embarked on discussions about moving the HOPE Portal to a new home. These discussions continued with the inclusion of the Association of Pediatric Oncology Social Workers (APOSW) as a key potential partner.  

In 2017, KBI Biopharma approached the partners with a proposal to update the platform using Anddit to take advantage of emerging technologies in machine learning that would allow enhanced searchability and ease of use.  The enhanced site allowed support organizations to customize their listing to provide more accurate information to users about available assistance and allowed users to customize their search for both national and local (by zip code) resources based on the type of assistance sought and diagnosis. The updated version of the HOPE Portal launched to the public in 2018. 

It is our enduring hope that the efforts to build and improve the HOPE Portal make it possible for individuals anywhere in the world to navigate the Internet and find valuable sources of health information, support, and concrete services that ease the many burdens and challenges of childhood cancer.

 

ANNOTATED BIBLIOGRAPHY

Ruccione, K. (1985). Final Report, We Can Cope: A Program for Parents of Children with Cancer: American Cancer Society, California Division.

This is the final report for a 2-year project evaluating a structured education program for parents of children with cancer at Children’s Hospital Los Angeles. The study randomized 18 parents to a 6-week course or control condition (usual services); parents in the control condition completed the course 3 months later. Parents in the experimental group had statistically significant gains in knowledge, improved mood state and coping abilities. Study limitations included small sample size and resources to conduct the course, limiting generalizability. This is a sentinel report in that the work described led to the development of the CHLA HRC.

Wallace, M. H., Bakke, K., Hubbard, A., & Pendergrass, T. W. (1984). Coping with childhood cancer: an educational program for parents of children with cancer. Oncology Nursing Forum, 11(4), 30-35.

This is a report of a non-randomized pilot evaluation of a structured education program for parents of children with cancer. A 6-week parent education course was evaluated in 6 U.S. treatment centers (n=145). Comparison of pre-/post-tests showed that parents gained and retained knowledge. This is an important publication relative to the project because collaboration with the authors of this paper made the CHLA randomized trial of the structured education program possible, and that ultimately launched the HRC Health Education Program.