From CF Adult and Family Advisors (AFA) to Community Voice

Transcription

1 2016 Year in Review

2 From CF Adult and Family Advisors (AFA) to Community Voice Where we have been and where we are going Community Voice is composed of over 300 people with cystic fibrosis, parents, spouses, siblings, and other family members who voluntarily provide input on matters related to CF care, research and quality of life. By sharing ideas through surveys, focus groups and committees, this dedicated group sheds light on what it means to live with CF and how the Cystic Fibrosis Foundation can best support the CF community both nationally and locally. Previously known for the past two years as the CF Adult and Family Advisors (AFA), this group has allowed the CF Foundation to move forward with a stronger awareness and responsiveness to the unique challenges people with CF and their families face every day and has paved a way for building partnerships within the community. The work and insights of this group has shaped content that has reached and impacted the entire CF community. As we move forward in 2017, not only will we work to expand the group s membership, but will increase diversity and opportunity ensuring that all voices within the community are heard. As a part of this effort, we have renamed the AFA as "Community Voice" and will be launching a campaign to increase membership. This name was the direct result of feedback we received from the group s members. We are deeply grateful for the work this group has done and we are honored to have the members of Community Voice by our side as partners. Drucy Borowitz, M.D. Vice President of Community Partnerships Cystic Fibrosis Foundation

3 Demographics The Community Voice sign-up form requested profile information regarding age, connection to CF, geographic location, involvement in the CF Foundation, topics of interest, and more 177 Connection to CF Total number of members in 2016: *Six members have multiple connections to CF

4 Demographics Continued Age Range of People with CF 62 Age Range of Family Members No Answer No Answer

5 Demographics Continued Alaska

6 Demographics Continued Areas of Interest Top Five Areas of Interest 1. Innovations in CF care 2. Public Policy Advocacy 3. Drug Development & Clinical Research 4. Programs for Adults with CF 5. Mentoring Areas where Community Voice members have contributed in 2016 Areas where collaboration with the Community Voice was not sought in 2016

7 In 2016, Community Voice Members Participated In: 12 Surveys Impacting web content, prioritization of projects, clinical trial design, and many more. 6 Committees Impacting research questions, CF Care Guidelines, and other topics. 4 Focus Group Projects Impacting clinical trial tools and transplant services. A Virtual Event for People with CF Speaking Engagements

8 Surveys Members of Community Voice participated in surveys on numerous projects #morethancf Along with others in the CF community, members of Community Voice were asked what can pass the time when clearing airways - often a time consuming task - and what activities can supplement traditional treatments.

9 Surveys Continued Health Apps Members of Community Voice were asked to fill out a 13-question survey about their thoughts and experiences using health apps to manage CF. The insights informed whether there was value in highlighting a list of apps that the community may find helpful. Results from the survey indicated apps like Fitbit, iphone health app, Evernote, Glucose Buddy, Spire, Growth+, Notes, and Sunrise were used to track weight, activity, sleep, calories, doctor appointments, questions for care team, and health records. Frequency of use ranged from daily to occurring during doctor visits. When asked what survey takers would like to see in a CF health app, many wanted an apps that had multiple, easy-to-use features (ex: tracking therapies, Rx reminders, fitness, lung function, weight, how I m feeling, CFRD, and proximity to others with CF as well as providing emergency information including list of medication and allergies). Transplant Navigator As the CF Foundation continued to identify how to expand resources in the area of transplantation, members of Community Voice were asked to identify the most pressing questions, needs, and available resources to support people with CF and their families during this phase. Some key themes that were identified were: Seeking emotional support as caregiver ( How best can I cope? Who can I talk to? ) Concern around affording treatment and logistics to provide after care Looking for information on the process and what to expect Dissatisfied with resources across the board

10 Surveys Continued Clinical Trial Feasibility Survey In the Spring on 2016, members of Community Voice were asked to participate in a survey that ultimately helped discussions the CFF had with the FDA on how best to design future studies of new CF therapies similar to Kalydeco and Orkambi. The voice of the CF community is critical to designing studies that people with CF would be willing to participate in so that improved drugs can be brought to market. The survey results were also shared at the 2016 North American CF Conference in October.

11 Clinical Trial Tools In July, the CF Foundation launched new clinical trial tools on Members of Community Voice contributed to these tools throughout the entire project. Members participated in interviews about the information they wanted to know about clinical trials, gave early input on the design and functionality of these tools, and participated in beta testing. Community Voice was critical in the success of creating a tool designed to meet the needs of the community. The Clinical Trial Finder provides a visually engaging and easy-to-use interface to identify trials by location, mutation, age, and more -- as well as easily contact with research coordinators about a specific study from within the tool. Views of the Finder increased from 83 to 26,000 within the first month. Within the Finder, people can use the Alerts Tool to receive updates when new, relevant trials have been added. The new Drug Development Pipeline clearly and quickly shows what phase each drug is in, including preclinical development programs.

12 BreatheCon A Virtual Conference for and by adults with CF In early 2016, members of Community Voice gave input on topics of interest for a potential virtual conference. During the summer, 10 people from Community Voice participated in a work group of 14 adults with CF to create the first ever virtual conference; a place for adults with CF to connect, learn, share, and inspire each other. The 100% virtual conference called BreatheCon was held October 7 & 8, 2016 with technological and organizational support from the CF Foundation. Members participated in groups focusing on either Outreach or Programming and Content. Conference attendance and participation was driven entirely by the networks and contacts of adults with CF. Based on survey feedback about the type of content individuals would be interested in seeing at a virtual event, participants enjoyed two keynote presentations, joined small group video breakout sessions, participated in mindfulness-based stress relief and yoga classes, and chatted one-onone and in groups. All content was prepared and delivered by adults with CF, with 21 individuals from Community Voice being involved in keynote presentations and breakout discussion facilitation. BreatheCon was a huge success with 80% of surveyed attendees rating BreatheCon as a 10 and saying that they would recommend the event to others in the future. The CFF will continue to partner with the community to develop spaces like BreatheCon for people in the CF community to connect. Click here to learn more about BreatheCon!

13 Speaking Engagements FDA Workshop Advancing the Development of Pediatric Therapeutics (ADEPT): Successes and Challenges of Performing Long Term Pediatric Safety Studies A Community Voice member was asked to speak about the challenges faced by children with a chronic illness like cystic fibrosis. The audience included FDA personnel, researchers, physicians, and others who make decisions about how treatments are studied in children. This 2-day public workshop focused on the challenges of long-term follow-up in children receiving medical products such as issues with study design, data capture, infrastructure, endpoints, and epidemiological challenges posed by the collection of data on different types of adverse events. Viewpoints of other parents and industry also were represented. It is important that members of the CF community educate regulators about what it s like to live with cystic fibrosis to shape how clinical research is conducted in the future.

14 Committees and Councils Members of Community Voice were recruited for a wide variety of committees and councils Education Committee CFTR Modulators Guidelines Committee Two members of Community Voice joined the CFTR Modulators Guidelines Committee to evaluate the evidence on the use of CFTR Modulators and develop guidelines for their use in individuals with CF. CFF guidelines committees are made up of members from the multidisciplinary CF Care team in addition to community members. Committee members develop key questions that the recommendations will look to provide guidance on and they consider the value of the evidence, the balance of the benefits and harms, the values and preferences of people with CF and their families, as well as the feasibility and acceptability of the proposed statements. To read more about CF Clinical Guidelines, please click here. The CF Foundation Education Committee was established to improve and help facilitate access to current CF education material for the CF community. Committee members developed key questions to evaluate the evidence and the benefits and harms. They weighed in on the values and preferences of people with CF and their families and the feasibility and acceptability of the proposed recommendations. Members of the committee: Review content for CFF s website Review abstracts for NACFC Identify areas of educational needs Provide feedback on design, readability and comprehension level Provide insight about how people with CF will use the CF education material produced

15 Committees and Councils Continued Mentoring Advisory Group Three members of Community Voice were invited to join a committee to provide guidance and strategic advice on a multi-center peer-to-peer mentoring pilot program for adults with CF. The overall goal of the peer mentoring program is to enable adults with CF to share their expertise on day-to-day life with CF with other adults. The membership of the committee includes individuals with CF, CF Care Center team members and CF Foundation staff. The goal of this committee is to help ensure a successful pilot peer mentoring program that is sustainable and provides the basis for national expansion. The CF Foundation provides infrastructure support and mentor training. Mentors use their knowledge, experiences, and compassion to support peers. In 2017, CFF will evaluate and expand this program to reach all adults with CF who want to connect with a peer mentor. For more information about the peer mentoring program or to inquire about bringing this program to your care center in the next expansion phase, please reach out at peermentoring@cff.org.

16 Committees and Councils Continued Patient and Family Research Advisory Committee (PFRAC) The Patient and Family Research Advisory Committee (PFRAC) enables the CF community to ask research questions that can be answered by information in the CF Foundation Patient Registry. The Committee is composed of adults with CF and families of individuals with CF who have diverse backgrounds and experiences. Members develop tools and processes to increase participation in the development, implementation, and dissemination of research. Individuals with CF and their families have a unique perspective that can widen the scope of CF research. Ensuring that the research is in-line with their needs and is accessible allows its impact to increase within the community. In 2016 members of the PFRAC group helped create and launch the Insight CF Project which allows CF community members to drive CF research. Since the project began, over 400 questions were received. To read more about the project, please click here. Click here to watch the InsightCF video!

17 Committees and Councils Continued Protocol Review Committee (PRC) Members of Community Voice worked alongside doctors, researchers, and statisticians to review seventeen clinical trial protocols for the Therapeutics Development Network s (TDN) Protocol Review Committee (PRC). The PRC is responsible for critically reviewing, critiquing, and rating all protocols submitted for conduct within the TDN. The primary purpose of the PRC review is to evaluate the scientific merit, feasibility, and study design of these protocols. The TDN PRC s goal is to improve the quality of the design of studies being conducted in the TDN. People with CF and family members contribute their perspective on what is or is not doable and acceptable, which ultimately improves enrollment efficiency. To learn more please click here Number of study protocols reviewed by community members

18 2017 Goals for Community Voice Increasing Diversity & Broadening Reach New Branding & Member Gifts Increasing Opportunities in Research & Advocacy

19 Appendix

20 Demographics Appendix Identified Gender of People with CF 6% 30% 324 Race/Ethnicity 64% Women Men Prefer Not to Disclose/No Reponse Identified Gender of Family Members 27% % 61% Women Men Prefer Not to Disclose/No Response In 2017, an effort will be made to ensure that Community Voice is more representative of the entire CF community.

21 Demographics Appendix Involvement with the CF Foundation I am involved with my local Chapter I receive CFF s I follow CFF social site(s) (e.g. Facebook, Twitter, or Instagram) I use CFF.org for clinical trial information I participate in policy advocacy efforts I fundraise Other