These pillars, targeted to help educate and connect the follicular lymphoma community, are essential as they build empowered, trusting relationships with communities that are then ready and willing to contribute toward a cure.
Today, we focus on the third and final pillar that makes up the HealthTree Model: a Powerful Patient Data Portal.
Our data patient portal, HealthTree Cure Hub, is designed to help patients and caregivers give back by connecting their medical data in a private, secure way. Researchers can analyze this anonymous data to come up with real-world solutions to complex follicular lymphoma issues.
Patients are also invited to participate in researcher-led studies and surveys to further key follicular lymphoma research.
The Purpose of a Powerful Patient Data Portal within HealthTree’s Model
HealthTree Cure Hub, though technically "one program" within the foundation, consists of many easy-to-use, everyday tools that help you navigate your follicular lymphoma and, at the same time, accelerate a follicular lymphoma cure.
When you're first diagnosed, it's hard to trust the multitude of information that's coming at you. That's where Pillar One, as mentioned before, comes into play because it helps organize, personalize, and simplify your follicular lymphoma education. Pillar Two allows educated patients to become connected with one another and their communities. Pillar Three, HealthTree Cure Hub, gives patients (and care partners) a chance to give back.
How does HealthTree Cure Hub get us to a follicular lymphoma cure? It facilitates research! Patients and follicular lymphoma investigators have pressing health questions and we created Cure Hub to answer those critical medical questions today. Through HealthTree Cure Hub, we will run queries (studies and surveys) led by top follicular lymphoma investigators.
Patients will have the chance to participate in these necessary studies and surveys, giving the researchers the ability to analyze the anonymized data to find the answers they are looking for.
Because we will have the ability to access so many patients, we are able to cut recruiting time and money in half. Researchers have access to anonymized, validated data instead of spending a fortune in time and money trying to collect a patient data subset on their own.
Doctors (oncologists and specialists alike) often complain they don’t have access to the patient’s complete health story, but Cure Hub allows doctors and patients to be on the same page about the patient’s health profile. Researchers believe a cure will come after understanding the full picture of the patient’s health history compared to others like them.
HealthTree Programs within HealthTree Cure Hub
HealthTree Cure Hub consists of many patient-friendly tools that help you manage your follicular lymphoma.
In Cure Hub, you can track all your follicular lymphoma labs in a single place, so you don’t have to create or maintain a separate spreadsheet.
HealthTree Cure Hub can currently search through hundreds of open follicular lymphoma clinical trials. Enhanced personalization is coming shortly to help you narrow the list down to only those clinical trials you are eligible to join.
As our follicular lymphoma Cure Hub database grows, you will be able to find and connect with patients who have similar experiences or genetics using our twin machine technology.
You can also use our Side Effect feature where you can see hundreds of side effects and thousands of crowd-sourced solutions provided by patients. Learn from your peers to see what worked and what didn’t to manage the most common follicular lymphoma side effects.
Surveys and Studies (coming soon)
Soon you will be able to contribute your answers to critical questions follicular lymphoma patients and researchers are asking today to help us drive faster to a follicular lymphoma cure. In this section, you will soon find surveys and studies led by top follicular lymphoma experts that you can participate in.
To participate in these amazing features and get the full advantage from them, make sure that you connect your medical records. This is a secure and private connection, and your personal data will never be sold/shared without being completely anonymized.
If you need help accessing any of these features, or connecting your medical records, or have questions in general about our research portal, contact our Patient Experience Team.
Invitation to Participate in the Future of Follicular Lymphoma
At HealthTree we believe no one should have to face follicular lymphoma alone. We encourage you to sign up for a HealthTree Cure Hub account to investigate all the tools and features provided to help you make the best follicular lymphoma decisions possible.
about the author
Katie joined HealthTree as the Community Director for AML in 2021 and became HealthTree's Director of Education in 2023. Katie is a registered dietitian who is passionate about health literacy and patient empowerment. She loves to cook, travel and spend time with her newborn son, husband and dog.