ILC²: Transforming Patient Care Worldwide

Patient Centered Quality Care for Lung Cancer: Research Based Design, Pilot Run and Promotion

Hope Foundation for Cancer Care, Taiwan

This project will examine current lung cancer care deficiencies and develop an innovative Patient-Centered Quality Care Program. In the short term, the project will focus on difficult situations faced by case managers and develop a pilot workshop to empower case managers to leverage digital tools, coordinate resources and elevate the quality of care. After piloting this program in three key hospitals, project organizers will advocate for program expansion to benefit more cancer patients.

Native American Community Lung Cancer Screening Road Map

Swedish Medical Center Foundation, United States

This project aims to lay the groundwork for a meaningful effort to increase rates of lung cancer screening in Native American communities. Project organizers will articulate and quantify the gap in access to screening, create community based partnerships to increase trust in the Native American community, and create educational tools to raise awareness and engagement in health through lung cancer screening.

Model for Improved Patient Participation in Shared Decision-making through Enhanced Understanding of Biomarker Testing Report Results

LUNGevity Foundation, United States

This project aims to empower lung cancer patients to make informed decisions about optimal treatments based on enhanced patient education on comprehensive biomarker testing report results. By auditing existing reports and qualitative provider/patient feedback on unclear items, project organizers will create a supplementary how-to-read a report discussion guide to encourage dialogue and positively impact treatment discussions between patients and their doctors.

Bridging the Gaps in Lung Cancer Care

Lung Health Foundation Canada, Canada

Project organizers will build and execute a support group framework dedicated to the specific needs of lung cancer patients and their caregivers throughout their cancer journey, using insights from patients, caregivers and healthcare providers in creating a gold standard for lung cancer support groups. By providing digital support groups, hard-to-reach populations will have access to psychosocial support and resources to aid them in navigating the healthcare system.

Learning with the Patient

LungCan, United States (fiscal agent: GO2 Foundation for Lung Cancer)

This project provides professional media training for LungCAN members nationwide, including biomarker groups. Advocates will attend a two-day media training workshop and will receive mentoring and e-learning modules, empowering them to harness their passion and reach others with a message of hope, as well as mentor other advocates. This project will have a significant impact by increasing media coverage of lung cancer.

L-Can Connect: Lung Cancer Advocacy Network

Roy Castle Lung Cancer Foundation, United Kingdom

L-Can Connect is a multi-platform project for people adjusting to lung cancer diagnosis and facing treatment decisions. It will offer patients and carers information, create a venue to share their experience, provide psychological support enabling them to develop coping skills and strengthen relationships between patients/carers and support organisations. The project will focus on offering tailored support to sub-sets of the lung cancer community where needs are greatest.

Collective Hope and Quality Life for Lung Cancer Patients

Kenya Hospices and Palliative Care Association, Kenya

This project aims to create awareness of lung cancer and the benefits of early detection; build capacity for primary health providers to diagnose, refer and provide palliative care; build capacity for caregivers to support their loved ones, collect data for advocacy to scale up quality services and form support groups. As a pilot, the project will collect data on the prevalence of lung cancer for effective advocacy.

Australian Lung Cancer Nurse Telehealth Service

Lung Foundation Australia, Australia

This project seeks to pilot a digital referral pathway and health service engagement strategy to increase access for patients in regional/rural/remote locations and those with poor access to local specialist nurse services. Project organizers will embed a digital patient referral pathway within the existing Lung Cancer Nurse Telehealth service, providing dedicated support to people with lung cancer, their families and carers; and building self-efficacy, connection and earlier presentation with essential support.

Airways of Hope

Lung Cancer Canada, Canada

This project proposes a live, bilingual social worker/nurse hotline that will be open once a week to provide psychosocial and access navigation support to patients. One a month, the social worker/nurse will run an online support group. In so doing, project organizers will provide lung cancer patients and caregivers with emotional support, practical advice, information and connections with one another; and will explore opportunities for local partnerships and advocacy to improve access to services.

New Lung Cancer Support Group Chapters

Dusty Joy Foundation, United States

This project will add three new lung cancer support group chapters to a network of six existing chapters. By providing monthly group meetings and distributing Hope Totes (gift bags) as an outreach tool, project organizers will bring patients together with expert speakers and engage nurse navigators to connect with newly diagnosed lung cancer patients. New chapters will be located in Raleigh, NC; Los Angeles, CA and Covington, GA.

Support and Advocacy for Lung Cancer Patients in Rwanda

Rwanda Palliative Care and Hospice Organization, Rwanda

This project will quantify the current prevalence of lung cancer in Rwanda and create a patient’s follow-up network, such as by providing transport to cancer treatment centers, access to palliative care services and support with daily stressors of treatment. The project aims to support people living with lung cancer and advocate for government investment in improving their health outcomes.

Lung Cancer in Costa Rica: Current Situation and Challenges for a Person-Centered Approach

Asociación Tour Rosa de Costa Rica, Costa Rica

This project proposes to analyze the Costa Rican context faced by people at risk of or diagnosed with lung cancer, to provide evidence-based recommendations and to promote a comprehensive person-centered approach for early diagnosis, quality care and timely treatment. Project organizers will examine epidemiological aspects, institutional offerings and barriers to care from the patient’s experience.

Learning with the Patient

Fundacion Pacientes de Cancer de Pulmon, Argentina

The project aims to systematize the learning that emerges from the patient's journey and generate the appropriate dialogue instances to adapt the health system to the new scenario. Project organizers will also develop recommendations to improve the patient's quality of life at each stage of the journey, improving the quality of information in order to support decisions that help patients and their family members overcome barriers.

Improving Health Equity in the African American Community through Lung Cancer Screening and Tobacco Cessation

American Lung Association, United States

This project will address racial disparities in awareness of and access to lung cancer screening and smoking cessation programming in cities with the highest proportion of African Americans sharing a disproportionate rate of smoking incidence and lung cancer deaths. Cities include Chicago, Philadelphia, Houston and Dallas. The project aims to work with community partners to identify African American smokers and help determine their risk of lung cancer and eligibility for screening. Tactics include communication through the “Saved By The Scan” campaign and training of healthcare providers for brief tobacco interventions and referrals for cessation and screening.

Early Comprehensive Cancer Care for Patients with Lung Cancer

Amelie, z.s., Czech Republic

This project aims to fill unmet needs in comprehensive care for cancer patients and their loved ones. With a network of oncologists, pulmonologists, social workers and patients, the program will provide support and education for patients in the Czech Republic, including individual counseling and information support through printed and digital resources.

Survivor Planner for Lung Cancer Patients in Thailand

Art of Life Social Enterprise Company Limited, Thailand

This project will connect lung cancer patients through the “Live Better with Lung Cancer” campaign to educate and increase awareness on lung cancer. The project aims to reach lung cancer patients and caregivers, covering 20 public and private hospitals around Thailand, enabling patient advocacy through a series of roadshow events and initiatives. It will kick off with the development of patient resources such as the “Survivor Planner” and the development of both online and offline patient communities. 

Lung Cancer Targeted Therapies and Checkpoint Inhibitor Use in Peru

ESPERANTRA, Peru

This project aims to carry out an investigation based on interviews with healthcare providers and patients to understand the patient path starting from lung cancer diagnosis. Learnings will help project organisers to understand current access to precision therapy and checkpoint inhibitors in Peru in order to guide future efforts for improved outcomes. The data from the investigation will be built into an online platform, with planned integrations with other relevant public sources of information in the impact of lung cancer in Peru.

Supporting Lung Cancer Patients in Greece – The bREATh Initiative

FairLife Lung Cancer Care, Greece

This project aims to create, promote and maintain a dedicated helpline, supported by trained individuals and specialists in lung cancer care, for patients in Greece. The helpline will help record, map and document existing problems and gaps in care, by recording the patterns of the patient’s journey until diagnosis. The initiative also plans to create an easily accessible and user-friendly clinical trial finder web-tool to assist patients’ access to lung cancer clinical trials in Greece and abroad.

Innovative Caring Model for Lung Cancer Case Managers and Patients

Formosa Cancer Foundation,Taiwan

This project aims to help establish the communication of lung cancer managers overall, and to provide a platform for shared experiences on a wide range of issues related to the quality of care of lung cancer patients. To accomplish this, an interactive platform will be developed to host needed patient resources. Secondly, a mobile app will be created to effectively improve case managers’ communication with lung cancer patients.

Building the Screening Opportunity

Fundacion ACIAPO, Argentina

This project aims to spread awareness of screening, while addressing the main barriers to access, which include cultural factors rooted in primary care services. Project leads will conduct meetings and trainings with 50 healthcare professionals committed to the support of screening, and will assemble support materials including videos and posters. The objective is to develop a team of committed professionals to lead others with the goal of highlighting patient cases and the need for screening to increase patient survival through early diagnosis.

Improving Education, Information and Support for Lung Cancer in Chile

Fundación Oncoloop, Chile

This project aims create a network among patients, caregivers, oncology institutions and health professionals to improve the distribution of education amongst the cancer community. The initiative involves creating an online platform to host a series of educational videos for patients, caregivers and future health professionals. The platform would be complemented with two informative apps, with one leveraging geo-localization to highlight areas of medical services for cancer patients in selected cities, and the second app informing patients and caregivers about health coverage opportunities. 

Increasing Diversity in the Lung Cancer Registry to Advance Inclusive
Research

GO2 Foundation for Lung Cancer, United States

This project will aim to diversify the Lung Cancer Registry (LCR) with the goal of increasing inclusive research and health equity. This project will provide education and support while facilitating the diversification of the registry through community partnerships and outreach to under-studied racial/ethnic and gender/sexual minority groups. The project will include the use of direct marketing and outreach, as well as engage strategic partners across populations to provide culturally appropriate support and educational materials.

Patient Connection App

Instituto Lado a Lado pela Vida, Brazil

This project aims to provide a quick, safe and accessible platform for patients to obtain information on lung cancer through a mobile app. The app will expand access to guidance during the patient journey with pillars to include lung cancer symptoms, early diagnosis, treatment and shared patient experiences. Also embedded within the platform is a chat feature that is accessible for patients 24/7, providing a tool to validate information and receive guidance on improving their quality of life and help to overcome the disease. In collaboration with partner hospitals and patient associations, the benefits and capabilities of the app will be promoted to patients from their trusted care teams to encourage app engagement and usage.

Healthy Emotions & Lungs Project (HELP)

Lung Foundation Australia, Australia

This project aims to help meet the significant surge in demand for trusted information and support, from lung cancer patients and caregivers who have reported increased anxiety as a consequence of the COVID-19 pandemic and associated disruptions to care. The new psychosocial support program will be delivered virtually via tele-health and video-health processes that are now well embedded as a service delivery modality by LFA. The program will cater to people living with lung cancer who are experiencing heightened mental health issues, providing support and tailored resources to patients. Additionally, the program will help refer patients to general practitioners and other support programs as applicable.

Stop Asking The Wrong Question

Lung Health Foundation, Canada

The Stop Asking The Wrong Question campaign aims to create an environment that will provide access to a more effective and timely diagnosis, effective treatment, and a strong base for education, awareness and advocacy to help reduce the stigma regarding lung cancer. The current campaign creatives and messaging will be evolved to speak more directly to healthcare providers, aiming to change their attitudes and perceptions to remove barriers created by stigma. Additionally, provider education sessions will be hosted to focus on how stigma impacts care. The project includes a policy recommendation report and a policy forum that will help to elevate the urgency of screening to provincial policymakers.

Hopetimize-Improving Quality of Life while Living with Lung Cancer

Life’s Door – Coping with Illness and Loss LTD, Israel

The project aims to improve the quality of life for patients with lung cancer and their caregivers by leveraging the Hopetimize platform, a workshop experience and digital app to foster and share communications. The hope is to empower patients to improve experiences of medical interventions such as treatments, check-ups, and imaging appointments. The project will include the training of ILCF national support teams, in preparation for 8 two-hour Hopetimize workshops with groups of 12 participants. The project will also include the development of materials for lung cancer patients and planned facilitation of workshops, with ongoing support to patients and caregivers after the workshop engagement.