Livestrong Solution Series: Cancer Community Collaboration & Connection

We know there are many organizations that are exploring opportunities to collaborate and find inventive and sustainable solutions to cancer problems that simply don’t deserve to exist. Recognizing we couldn’t support all 231 projects in our 2020 round of funding, but wanting to foster connection and unite innovation, we created the Livestrong Solution Series: a monthly interactive web-based series that facilitates collaborative discussions among grant applicants all working on similar projects or with an aligned mission to collectively serve the cancer community. Each monthly topic brings together different organizational leaders and program experts from across the country to discuss challenges and brainstorm solutions.

Since announcing our 2020 grant partners, we’ve held five Solution Series webinars. Each webinar was held on the last Wednesday of the month (May-Sept) at 11.00 am CST. During these 60 minute sessions, we discussed one or two key challenges the panels were facing, in addition to contributions from attendees through the Q&A and chat features on Zoom. The webinars were free to attend. Full video recordings, together with panelist bios for each session, were distributed after each event to all those who’d registered. They were also listed on the Livestrong website.

Our 2020 Solution Grant Partners have featured as panelists in our Solution Series, along with other topical and programmatic experts — all were 2020 Grant Applicants. We couldn’t have organized these webinars without the panelists, 24 in total, who came together to share experiences and offer insightful suggestions. Below is a summary of the topics, challenges, and solutions we collectively discussed.

Physical Activity Programs

Challenge: Fundraising shortfalls.

Proposed solutions:

• virtual events instead of in-person events/activities.
• early year-end giving.
• grants for pilot programs or research.

Challenge: Adaption of programs due to COVID-19.

Proposed solutions:

• Consider alternatives to normal programmings, such as virtual programming.
• While in-person interaction and team building are critical components of psychosocial programming, address this difficulty by including previous program participants to encourage vulnerability during virtual discussions.
• Temporarily change target populations to serve a population less at risk, such as caregivers, family members, etc. Lower-risk groups could enable organizations to continue to put to good use the resources and networks established in previous years until it is safe to serve cancer patients and survivors again.

Challenge: The need for more research for pediatric physical activity programs.

Proposed solutions:

• Continue to educate healthcare providers on the benefits of physical and outdoor activity.
• Continue to invest in research and pilot projects, and advocate for health insurance coverage of physical activity programs.

Technology Programs

Challenge: Clients’ lack of technology hardware and internet

Proposed solutions:

• Communicate via phone — for therapy sessions or assistance in completing forms — instead of video conferencing and electronic online forms.
• Contact organizations that assist with technology and the internet (e.g. Hopecam)
• Utilize school district-provided hotspots.

Challenge: Lack of security to discuss confidential patient information

Proposed solutions:

• Consider secure platforms, such as Haiku (a secure EpiCare app for patient charts), RingCentral (a secure video-chatting, phone, and messaging service), Apricot (a secure data management service).

Challenge: Virtual Visits with Pediatric Clients

Proposed solutions:

• Keep sessions short and interactive.
• Have a parent in the room with children, or close by if the child needs privacy.

Arts and Creativity Programs

Challenge: Changes to programming due to COVID-19

Proposed solutions:

• Cancel or postpone in-person programs.
• Offer virtual creative classes.
• Create virtual art gallery tours and exhibitions.
• Provide hybrid classes.
• Change the location of classes to outdoors, and socially distanced.

Challenge: Higher program costs due to an increased demand for individually packaged art supplies

Proposed solutions:

• Create a campaign to raise money for shipping costs of to-go art projects.
• Pre-package art supplies for pick-up at program location (instead of mailing).
• Use household items for art projects.
• Reallocate program budget costs (e.g. event space) to offset higher shipping costs.

Challenge: Burnout from virtual programs

Proposed solutions:

• Limit program time to under one hour.
• Make programming highly interactive — not just sitting at a screen.
• Combine lectures/presentations with breaks and activities away from the screen.

Challenge: Access to virtual programs

Proposed solutions:

• Provide clear and specific instructions — even on some basic issues like setting up an email account.
• Designate staff to specifically help with technical issues.
• Offer one-on-one “office hours” to provide instruction on technology set-up and access before the online event begins.

Challenge: Long-term Planning/Budgeting

Proposed solutions:

• Stay flexible; be creative
• Adjust budget line items to reallocate unused funds.
• Have a backup virtual plan for any future in-person programming.

Children and AYA Programs

Challenge: Mental Health needs that come from social isolation and trauma

Proposed solutions:

• Ensure children and young adults know about mental health care options.
• Use teletherapy and surveys to screen for PTSD.
• Create craft boxes, and offer virtual art classes if possible.
• Provide technology so children can connect with friends and teachers.

Challenge: Lack of funding due to COVID-19

Proposed solutions:

• Collaborate with other nonprofits to raise funds, apply for grants, or share services.
• Advocate for the continued Medicaid coverage for telehealth visits.
• Adapt programs in light of COVID-19 and highlight changes/needs in funding requests.
• Apply for technical assistance grants to help cover the costs of program measurements and evaluation.

Additional challenges/gaps in care highlighted due to COVID-19:

• Lack of housing — Housing programs like Ulman House and Ronald McDonald House have shut down due to Covid-19 restrictions.
• Food insecurity — Families feel unsafe going to the grocery stores; lack of finances for food due to the pandemic and the economic downturn.

Navigation Programs

Challenge: Lack of access to resources due to geography, discrimination, and/or technology

Proposed solutions:

• Crowdsource resources from cancer survivors to use the networks already in place in different regions.
• Use technology to increase connection to people who otherwise would be limited by geography and transportation.
• Provide navigation resources on a website so scheduling phone calls/meetings are less of a barrier.
• Utilize known and trusted healthcare centers/clinics that make clients feel welcome.

Challenge: Lack of resources leading to service limitations

Proposed solutions:

• Utilize online navigation tools as a way to reach more people, instead of 1–1 phone or in-person navigation.
• Utilize lay navigators and trained volunteers to scale programs.

Challenge: Tracking and measuring outcomes

Proposed solutions:

• Subjective Measures
• Surveys, yearly evaluations
• Direct feedback from programs and sessions
• Focus groups and interviews
• Objective Measures
• Number of people requesting navigation services
• Number of participants in support groups, activities, etc.
• Number of website visitors, page views, resource downloads

We asked for feedback from all registered attendees and we were amazed to hear that respondents said they heard compelling conversations about program opportunities, challenges, and considerations; learned something new; found inspiration for future or current programming; shared insights/experiences with others; and/or found potential new partners. Attendees came from 16 different states, on average for each webinar. Most attendees were Program Directors or Executive Directors, followed by Development Officers or Grant Managers. Other attendees included Healthcare Professionals and Consultants.

One respondent shared the following comment: “I really appreciated hearing the different perspectives for the nonprofits and health professionals and appreciated hearing the different roles the panel members serve within the community.”

The Solution Series webinars will be back in the new year, once we’ve completed the 2021 Solution Grants cycle. Whether you receive funding from Livestrong in this upcoming cycle, we appreciate your dedication to serving the cancer community and are excited to continue our conversations; collectively discussing challenges and finding solutions to everyday cancer problems that simply don’t deserve to exist.

Victoria Threadgould | Director of Grants Management | grants@livestrong.org