3B-1: The Evolution of Cancer-Related Engagement Via Facebook: The Experience of a Comprehensive Cancer Center

Jena Andrus, Garrett Harding, Jeff Yancey, Lisa Anderson, Donna Branson, Lara Niederhauser, Niki Alpers
Huntsman Cancer Institute, Salt Lake City, UT, USA

Abstract: Background/Purpose:The presentation will demonstrate Huntsman Cancer Institute (HCI)’s experience responding to cancer-related inquiries via Facebook. Since establishing a Facebook page in 2009, HCI has experienced mediocre success with the online community. In August 2014, HCI established a social media committee comprised of four departments: Public Affairs, Communications, Development, and Patient and Public Education, who meet monthly to increase social media presence, educate on cancer risk and prevention, and highlight strategies for inquiries and responses. Description: HCI staff established Facebook policies and procedures with an emphasis on health literacy, accurate information, compassionate answers, and applicable strategies. In addition to policies and procedures, CIS staff members draw on extensive cancer education training to formulate responses and monitor the ebb and flow of Facebook activity. Strategies for response include: personalization, inquiry purpose, referral to local and national resources, attention to empathy, and accurate facts and information. As needed, CIS staff members interact informally to discuss appropriate responses in accordance with patient confidentiality. A schedule was also created for CIS staff members to organize and monitor daily Facebook activity (i.e. wall posts, messages, comments, likes, etc.). Evaluation: Facebook activity and engagement has increased exponentially in the first three quarters of FY 14-15. Success is measured by engagement activity, diversity of population reached, and number of daily, weekly, and monthly inquiries from August 2014 –2015. Reviews and comments from Facebook followers are positive and reaffirm program goals and strategies. A formal method to evaluate the effectiveness and value is planned and in process. Usefulness: The innovative solutions presented are designed to help health educators understand the need of accurate, compassionate, and multifaceted responses to cancer inquiries via Facebook. Other benefits include: management of activity/engagement, dissemination of cancer education response strategies, and evaluation practices. Additional evidence suggests that implementation will help meet the mission and goals of other organizations. Relation to Theme: The Evolution of Cancer-Related Engagement Via Facebook: The Experience of a Comprehensive Cancer Center is an opportunity to share an innovative cancer education program that provides a unique strategy to answer cancer related inquiries to a diverse population of Facebook followers. Learning Objectives: Objective 1: The participant shall be able identify 2 methods to respond with accurate information and compassionate answers to cancer-related inquiries via Facebook. Objective 2: The participant shall be able to develop a set of policies and procedures for health educators who respond to cancer-related inquiries via Facebook. Objective 3: The participant shall be able to implement 3 strategies for cancer-related inquiries via Facebook. References: 1. PEW Research Center (2014). Pew Research Center’s Internet Project Omnibus Survey, January 23-26, 2014. Retrieved from http://www.pewinternet.org/fact-sheets/social-networking-fact-sheet/. 2. Sage Journals (2012). Use of Social Media in Health Promotion: Purposes, Key Performance Indicators, and Evaluation Metrics, 2014. Retrieved from http://hpp.sagepub.com/content/13/2/159.full.pdf+html

3B-2: Applying a Person Centred Care Framework to the Development of Cancer Care Navigational Videos

Gwen Barton
The Ottawa Hospital, Ottawa, Canada

Abstract: Background/Purpose As an initial step to advance person centred care, The Ottawa Hospital Cancer Program held a major consultation session with patients and family members from across its large catchment area. This resulted in many recommendations to improve the patient experience, including the need for more navigational support during the cancer care experience. In response, we have continued to apply the person centred care framework to develop a series of videos that complement existing patient educational strategies. A fundamental component to this approach is ensuring the patient and family voice is involved in every step of the way. Description: Patients and family members participated as full members on a working group established to plan and develop videos that support the patient journey with cancer care- beginning with the identification of priority areas on which to focus. Patients and family members reflected on their experiences and worked with health care providers to identify key messages and explore how these could be conveyed through video context. They were also valuable contributors to script development providing advice on specific dialogue that should be used. This collaborative approach allowed for important educational information to be shared in a way that was as meaningful as possible to the intended audience. Evaluation: Future evaluation of the navigational videos will assess the overall impact on patient experieince including assistance with navigational support, information about upcoming treatment, and level of anxiety. Usefulness: The navigational videos will be a helpful resource to all cancer patients, but especially those who travel significant distances to access our Cancer Centre. This includes people from rural communities, as well as those from the far north region of Nunavut who come to Ottawa for cancer care services. Relation to Theme: The development of navigational videos using a person centred care approach enables us to better support the educational needs of all patients, particularly those who live outside the urban area of Ottawa. We are also able to translate the videos to reach populations whose first language is not English. Learning Objectives: 1. The participant shall be able to describe the importance of incorporating the patient and family member voice as partners in health care. 2. The participant will be able to describe effective ways to partner with patients in the development of educaitonal material. References: 1. Groene, O. (2011) Patient Centredness and Quality Improvement Efforts in Hospitals. International Journal for Quality in Health Care 23(5):531-537. 2. Edgman-Levitan, S, Brady, C and Howitt, P (2013) Partnering with Patients,Families, and Communities for Health: A Global Imperative, Report of the Patient and Family Engagement Working Group.

3B-3: Using Virtual Programs to Deliver Education and Support to People with Cancer and their Caregivers

Jennifer Wang, Chasity Walters
Memorial Sloan Kettering Cancer Center, New York, NY, USA

Abstract: Background/Purpose: Education and support groups are valuable in helping people with cancer and their caregivers cope with physical and emotional concerns throughout the cancer continuum. The recognition that attending meetings can be difficult, especially for those who are seriously ill, live far from their care center, or who are busy managing the demands of work and family life led to the establishment of a formal Virtual Program (VP) in 2010. Description of the program: VPs offer confidential and free education and support sessions. Participants call in and connect via their computers, Smartphones, or tablets. Sessions are moderated by social workers, physicians, nurses, psychiatrists, and dietitians, depending on the topic, which include disease-specific support, preoperative education, and general support and education. Evaluation: In 2014, 24 programs were offered, including 8 education programs (114 sessions, 326 attendees) and 16 support programs (132 sessions, 537 attendees). Sessions range from 0.5 to 1.5 hours each. Eight-six percent of the education program participants and 87% of the support program participants were satisfied with the virtual experience. Participants appreciate being able to access the sessions from home or work, the anonymity when sharing, and the direct access to healthcare providers. Some participants reported it took time to adjust to the technology and not being able to see other participants. Challenges of VPs include the absence of visual cues found in face-to-face interactions, potential technology issues, and the development of moderators’ communication styles in the online environment. Usefulness: VPs provide the opportunity for people to learn about their cancer and to mutually benefit from others’ experiences regardless of their geographic location. Furthermore, they provide an opportunity to reach diverse populations in an environment where the lack of visual cues to sociodemographic characteristics may diminish barriers and allow participants to fully engage without feeling judged. Relation to Theme: Virtual (web-based) programs employ technology to provide multidisciplinary education and support to diverse populations across the cancer continuum. This innovative approach allows healthcare providers to communicate information and provide support in a time saving and cost effective manner by minimizing transportation expenses and the need for a physical meeting space. Learning Objectives: The participant shall be able to identify benefits of implementing virtual programs to meet the needs of patients, caregivers, and healthcare providers within their healthcare setting. References: 1. Gorlick, A., Bantum, E. O., & Owen, J. E. (2014). Internet-based interventions for cancer-related distress: exploring the experiences of those whose needs are not met. Psychooncology, 23(4), 452-458. 2. Weiss, J. B., Berner, E. S., Johnson, K. B., Giuse, D. A., Murphy, B. A., & Lorenzi, N. M. (2013). Recommendations for the design, implementation and evaluation of social support in online communities, networks, and groups. J Biomed Inform, 46(6), 970-976.

3B-4: Development of a Virtual Education Module on Nutrition for Head and Neck Cancer (HNC) Patients

Karen Collum
Memorial Sloan Kettering Cancer Center, Northvale, NJ, USA

Abstract: Background/Purpose: Patients with HNC are often malnourished at the time of diagnosis. The side effects of treatment (radiation and chemotherapy) further exacerbate that state, leading to interruptions in treatment, and in some cases, the inability to complete treatment. This creates a demand for healthcare providers to provide educational interventions for these patients and their caregivers. National initiatives directed at integrating technology into patient education and the promotion of patient engagement in self-care led to the exploration of the use of a multimedia virtual education module to deliver the intervention. Description: Following the development of the virtual module content by the clinical team, patients were asked to participate in a pilot to determine if the virtual module provided the intended content. Eligible patients were provided pre-intervention survey (5 questions) electronically to determine their baseline knowledge. Upon completion of the survey, participants were emailed a link to the virtual education module. The post survey, containing the same pre-intervention questions with the addition of six satisfaction questions, was emailed to participants one week later. Evaluation: This study demonstrated a statistically significant (p = 0.007) improvement of knowledge following the virtual module intervention. All participants were able to demonstrate a consistent (46%) or improved (54%) knowledge following access to the virtual module. Specifically, patients were better informed to identify foods highest in calories based on the content of the virtual module. This is demonstrated by the statistical significance (p = 0.009) of the survey results for question two. Additionally, the frequencies of favorable responses to the satisfaction questions indicate patients would be amenable to receiving education in this format. Usefulness: The successful implementation of a virtual education module provides increased patient education resources for patients, caregivers and clinicians. Additionally, the success of this implementation provides evidence to support further virtual education modules. Relation to Theme: Development and implementation of a virtual education module for oncology patient is a need in many organizations due to lack of patient participation in on-site educational meetings. The piloting and evaluation of a virtual education module has the potential to increase patient’s flexibility and accessibility to necessary information. Learning Objectives: Participant shall be able to identify opportunities for development and implementation of a virtual education module and determine a strategy for evaluating the use among patients and staff. References: 1. Armstrong, A., Idriss, N., & Kim, R. (2011). Effects of video-based, online education on behavioral and knowledge outcomes in sunscreen use: A randomized controlled trial. Patient Education and Counseling 83, 273-277. 2. Thompson, J., Silliman, K. & Clifford D. (2013). Impact of an early education multimedia intervention in managing nutrition-related chemotherapy side effects: A pilot study. Springerplus, 2, 179.

3B-5: One year later: evaluating the effectiveness of plain language integration in a clinical trials website/app

Paula Schultz, Regina Carlisle, Chesley, Cheatham, Melissa O’Grady
University Hospitals Seidman Cancer Center, Cleveland, Ohio, USA

Abstract: Background: Online clinical trials apps have made searching for cancer trials easier than ever. However, medical jargon used in trial titles and descriptions presents a barrier to the general public. People search for and find a trial online but may not understand its description or purpose. Integrating plain language into clinical trials apps can help diverse users understand and act upon information they find. Yet, this method has received little scholarly consideration. Purpose: In 2014 a team from the Office of Patient and Public Education (OPPE) at University Hospitals Seidman Cancer Center (UHSCC) facilitated integration of plain language titles and trial purpose statements into all (140+) open clinical trials on our searchable website/app. In early 2015 user testing of plain language purpose statements began. The goal is to determine user comprehension of; a. the treatment being studied b. cancer type under consideration and c. basic inclusion/exclusion criteria. Description: As of early April 2015, 420 user tests of 15 clinical trial purpose statements using 216 adult volunteers from diverse populations were completed. Volunteers were given a screen shot of the trial details page, asked to read the plain language purpose statement and answer 3-5 questions to test comprehension. Purpose statements with less than an 80% correct answer rate for comprehension questions were revised and retested. Evaluation: The majority of comprehension questions asked showed adequate user understanding (above 80% correct rate). Barriers to comprehension were identified and seven purpose statements were revised and retested. Detailed evaluations will be shared as well as future direction for the project. Usefulness: Nurses answering the UHSCC Cancer Information Service Line report that callers find the website/app helpful for understanding clinical trial basics. The application has prompted calls to the cancer center for more information and/or next steps needed for trial participation. Relation to Theme: Integrating plain language into clinical trials online apps is an innovative method to help users understand and act upon information they find. User testing with over 200 volunteers from diverse populations reveals strategies for effectively using plain language to enhance comprehension of trial basics for the general public. Learning Objectives: Participants shall be able to: 1. Identify at least two barriers to comprehension of clinical trial basics for diverse groups in the general public. 2. Apply evidence based user testing principles to plain language descriptions used in clinical trials websites/apps. 3. Evaluate effectiveness of plain language descriptions used in clinical trials websites and apps. References: 1. Jordan Broderick, Theresa Devine, Ellen Langhans, Andrew J. Lemerise, Silje Lier, Linda Harris (2014). Designing health literate mobile apps. IOM Roundtable on Health Literacy’s Collaborative on New Technologies, Discussion Paper, 2-4. 2. U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion. (2010). Write in plain language. Health literacy online: A guide to writing and designing easy-to-use health web sites, 26-27 3. Dina Utami, Timothy W. Bickmore, Barbara Barry, Michael Paasche-Orlow, (2014). Health literacy and useability of clinical trial search engines. Journal of Health Communications, 19:190-204