Innovator Spotlight

Q: Can you tell us briefly what the Chordoma Foundation’s Patient Navigation Service does?

The Chordoma Foundation’s Patient Navigation Service (PNS) helps individuals affected by chordoma overcome barriers to getting the best care possible, whether it’s finding the right doctors, understanding treatment options, or getting social and emotional support.

While CF has always served as a resource for patients and families in need of support, the launch of our PNS in April of 2015 allowed us to formalize and expand this offering, providing in-depth, personalized assistance to patients and caregivers around the world via e-mail, phone, and social media.

In the past 14 months we have helped more than 450 individuals in 37 countries navigate the medical, emotional, and practical challenges posed by chordoma and connect with qualified care teams. Some examples of the assistance we provide include:

  • Answering questions and explaining important concepts about chordoma and treatment options.  
  • Facilitating referrals to experienced physicians and treatment centers.
  • Identifying and providing information about clinical trials for which a patient could be eligible.  
  • Recommending home health services, medical equipment suppliers, and other relevant vendors and service providers.  
  • Providing information about programs and organizations that offer travel and lodging assistance, co-pay relief, and other benefits.  
  • Supporting requests and appeals to insurance companies.
Q: What was the need – both in the chordoma patient community and at the Foundation – that the PNS was intended to address?

 Chordoma is a rare disease with a lack of available information for patients, and the majority of people it touches aren’t prepared to address the many barriers that stand in the way of getting appropriate treatment. Too few providers are equipped to accurately diagnose and manage chordoma, and too many patients receive suboptimal care. Getting the right treatment from a trained care team can have a huge impact on patients’ outcomes, and can literally mean the difference between life and death.

That’s where we come in. From its start, CF has had a two-pronged mission: to lead the search for a cure and to improve the lives of those affected by chordoma. We view these objectives as inextricably linked, and recognize that if we can help patients overcome the barriers that exist in both care AND research, we can hopefully prevent them from getting suboptimal treatment and also improve their odds of beating the disease. Supporting the patient community through the dissemination of reliable information and the offering of practical and emotional support not only creates a better experience for everyone affected by chordoma, it also enables us to build the relationships and trust needed to increase participation in clinical trials and advance research toward cures.   

Q: What have been the biggest challenges in planning, launching, and sustaining this effort?  What lessons have you learned?

 The biggest hurdles we have had to overcome to create the Patient Navigation Service have been knowledge and training, information technology tools, and global population needs.

 Because chordoma is such a rare and complex disease, and so few providers are adequately trained to address it, our staff needs to be armed with a significant amount of specialized knowledge to be able to respond and assist patients appropriately. There are many different scenarios and situations that patients face, and lots of different questions arise. Growing our knowledge base and providing the training needed to educate our staff about the nuances of chordoma has been a core focus in the first year of the service.  

 Even with the proper training and experience, however, there is still a huge amount of knowledge that has to be documented, requiring the development of a customized case management system to keep track of it all. From which doctors are experienced to how to contact them to the nuances of various health systems and care practices around the world, a breadth of information must be gathered and tracked on an ongoing basis to enable us to provide the best, most up-to-date guidance possible. Also, with multiple touch-points for every patient, we needed to be able to record the details of each interaction so that conversations could be picked up weeks to months later with no thread lost.

 Finally, our global patient population presents a challenge as we must navigate cultural, political (e.g. health systems and processes), and language barriers in order to serve them, which requires a working knowledge of which doctors have chordoma expertise around the world and what the most reliable tools and resources are in dozens of countries.    

 As you can imagine, these all require both time and resources to get right, two things foundations like ours don’t tend to have a surplus of.     

Q: What new capacities did your organization have to acquire or develop internally?

 Before starting the PNS we fielded calls from patients and family members looking for advice or assistance of various types. The demand outstripped our ability to keep up. Furthermore, given how much is at stake for patients, we recognized a need to provide a higher level of service from a skilled patient navigator.

 To develop the PNS we first needed to hire the right person to run it. In 2014, thanks in part to a grant from Celgene, we hired our first Patient Services Manager, a social worker with over a decade of experience in education and social services. Early steps along the way to implementing the new service included creating a comprehensive knowledge management tool, developing a core set of principles to govern the service, establishing procedures to get feedback from our medical advisory board, and creating new educational materials (in multiple languages) to augment the messages delivered by our staff. More recently, we’ve been working on developing marketing materials and investing in outreach to the patient community to drive utilization of the service.

Q: Are there successes you can point to?  Have there been benefits to the Foundation offering this service to patients?

 As mentioned above, since our launch in 2015, we have helped more than 450 individuals in 37 countries find experienced doctors, make informed decisions, alleviate anxiety and concern, connect with peers, and avoid potentially devastating consequences of receiving inadequate, or just plain wrong, treatment. And the need for this service continues to grow. We anticipate serving another 500 affected individuals in the year ahead, and more beyond that.

Our PNS has also helped facilitate referrals to an ongoing phase II clinical trial at the National Cancer Institute, and will begin assisting in patient education for three upcoming chordoma clinical trials set to begin later this fall. In the future, we expect that PNS will play a critical role in educating providers about clinical trials and connecting clinical research partners with our patient community.

 For a personal example of a patient whose path was dramatically altered by her involvement with our PNS, read Monica’s story.  

Q: What advice would you give other foundations that might be interested in undertaking a similar effort?
  •  Plan to scale. Build the service not just for current demand, but for a multiple of that in the future.
  •  Recognize that the size of your team, your standard operating procedures, your knowledge and case management technology, and potentially even your international capabilities will need to scale as demand grows.
  •  Put in place a medical advisory board or some similar sounding board comprised of experts that can guide the development of your knowledge base, and provide advice and guidance to staff as questions arise.
  • Be prepared and willing to adapt “traditional” patient navigation practices to accommodate the geographic scope and unique needs of the patients you serve.