These pillars, targeted to help educate and connect the myeloma 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 2.0 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 myeloma issues.
Patients are also invited to participate in researcher-led studies and surveys to further key myeloma 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 myeloma and, at the same time, accelerate a myeloma 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 myeloma education. Pillar Two allows educated patients to become connected with one another and their communities. Pillar Three, HealthTree Cure Hub, gives patients (and caregivers) a chance to give back.
How does HealthTree Cure Hub get us to a myeloma cure? It facilitates research! Patients and myeloma investigators have pressing health questions and we created Cure Hub to answer those critical medical questions today. Through HealthTree Cure Hub, we run queries (studies and surveys) led by top myeloma investigators.
Patients 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 of our ability to access so many patients (over 11,000 patients have an active HealthTree Cure Hub account), 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 multiple myeloma.
In Cure Hub, you can track all your myeloma labs in a single place, so you don’t have to create or maintain a separate spreadsheet.
Cure Hub can help you look ahead and find a list of treatment options personalized just for you that you can consider based on your prior therapies, genetics, and other factors.
HealthTree Cure Hub can search through hundreds of open myeloma clinical trials. Enhanced personalization is coming shortly to help you narrow the list down to only those clinical trials you are eligible to join.
You can 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 myeloma side effects.
Contribute your answers to critical questions myeloma patients and researchers are asking today to help us drive faster to a myeloma cure.
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 Myeloma
At HealthTree we believe no one should have to face myeloma 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 myeloma decisions possible. We also urge you to participate in the studies and surveys available to you to contribute toward a myeloma cure.
You can learn about the new and improved HealthTree model, our goals, and how you can be involved in our upcoming HealthTree 2.0 event. Invite your friends & family and join us on October 23, 2023, to hear how you can get your best care and contribute to accelerating a myeloma cure.
Thanks to our event sponsors, Bristol Myers Squibb, Amgen and Genentech, for making this event possible.
about the author
Audrey is the Editor for the HealthTree Foundation for Multiple Myeloma. She originally joined the HealthTree Foundation in 2020 as the Myeloma Community Program Director. While not knowing much about myeloma initially, she worked hard to educate herself, empathize and learn from others' experiences. She loves this job. Audrey is passionate about serving others, loves learning, and enjoys iced chais from Dutch Bros. She also loves spending time with her supportive husband and energetic three-year-old.