Nonprofits comprise 5.7% of the US GDP, contributing $2.62 trillion to the economy. But their impact goes well beyond their direct financial contribution. Foundations and not-for-profit organizations often act as catalysts for education and patient advocacy, providing a missing link between a patient and their health care provider.
When a patient is diagnosed with a serious, rare, or complex disease, it is no surprise that these organizations become a trusted source of reality. With their help and guidance, patients can learn about their disease, connect with other patients, and receive guidance towards the latest treatments as well as recommendations for the most appropriate specialists and hospitals. Providers that engage foundations and not-for-profit organizations to ensure they have the latest treatment options and research available, gain an opportunity to connect and engage with patients that are battling through their critical health issues on a daily basis.
Collaborating with Patient Foundations
While there are many large well-known foundations, such as the American Cancer Society, there are far more medium and small sized foundations, like Target Cancer, the Mike Shane Memorial Fund, the Pediatric Brain Tumor Foundation to name a few, that provide a niche focus and support for underfunded rare or complex diseases. As more hospitals include narrow specialties, these foundations bridge the gap between providers and patients, increasing awareness and transparency, ensuring patients are empowered with options. Hospitals that engage with foundations of all sizes and specialties will enrich their patient support network.
Establish Open Lines of Communication
Foundations may provide a specific type of support to patients, whether financial support or a service. Establishing open lines of communication so that program administrators and financial services teams are aware of what kind of support is available and how the patient can qualify, will make it easier to direct patients to the right foundations for their needs. An internal or external web page that serves as a directory may be especially useful.
The Mike Shane Memorial Fund is one example of a foundation that provides specific support for second opinions for anyone diagnosed with the rare and aggressive cancer, cholangiocarcinoma. Volunteers at the Mike Shane Memorial Fund act as case managers to help facilitate second opinions. Due to the specific support that the Mike Shane Memorial Fund provides, other foundations and hospitals collaborate with them, sending patients in their direction for a second opinion to explore their options following diagnosis.
Foundations network with one another, and serve as a guide to hospitals in directing patients to another foundation that may be able to provide additional support for the patient and their family.
Similarly, an open line of communication with foundations allows hospitals to share their latest research and developments in treating the disease directly with patient advocates. Since foundations tend to run on volunteers, they may not have the manpower to research and collect the latest developments coming from different hospitals. Ensuring that foundations are aware of your clinical trials, treatment options, breakthroughs, directory of specialties, services, locations, and so on, will save everyone time. Hospital’s marketing teams regularly collect and organize this kind of information for the institute, and have served as effective communicators to foundations. Best of all, with clear direction, patients may find care sooner and achieve a better health outcome.
Some hospitals also offer hotlines or telehealth services, like online second opinion programs, where foundations can easily refer patients. When it comes to subspecialties for rare or complex diseases, these services are especially helpful when most are not broadly accessible and the patient will likely need to travel. They provide an opportunity to remotely review the patients’ medical records and render an opinion on whether they should travel in-person for a treatment or procedure. This approach saves both the patient and hospital time and money. It’s safer and more comfortable for the patient as well, removing the risk of exposure during flights or travel while immunocompromised. Notifying foundations of these options and how to use them opens channels for accessing care.
Added Support for Patients
Many foundations provide emotional support, mentorship and coaching to patients and their families. These groups are typically made up of former patients and families, who are intimately familiar with challenges patients and families will face. They may have dealt with the same diagnosis for a long time, or are on the other side. These support groups are ready to help with a long list of tips and lessons learned through their own experiences.
As hospitals continue to financially recover post-covid and deal with major staff shortages, connecting patients directly with support groups and coaches from these foundations can only help to provide patients with additional support.
Patients on the other side of their diagnosis, or family members who have lost someone to an awful disease are passionate about eradicating the disease that impacted them and continues to impact others. Building a collaborative community between foundations, patients, researchers, and physicians can only increase awareness, knowledge, and innovation. Foundations play a vital role in connecting members across this community and driving positive change. They act as a beacon in the darkness when patients need support, advocacy, and guidance. Hospitals that work together with patient foundations can become part of helping these patients from the beginning of their journey.
Learn more about how some peer hospitals are already collaborating with foundations
at Purview's next live webinar: Fostering Relationships Between Hospitals and Foundations