Day 10 of Myeloma Giving: Tell a Friend About HealthTree
From December 10 – 22, the Myeloma Crowd is sharing 12 Days of Myeloma Giving. Please share this post and invite your friends and family to participate. Each day we will share something you can give to lift others. These gifts will save lives, lengthen lives and makes lives happier and more meaningful – maybe even your own.
HealthTree. It helps you, your treating physicians, your fellow patients, and researchers throughout the world. It’s free. It belongs to you. It may tell you things about yourself you hadn’t considered before. And I think it’s the most exciting thing to hit the myeloma community since the news that thalidomide had an effect against the disease.
For more than 20 years I have met myeloma patients as people in need of information, patient advocates, friends and, at times, as close friends. The one thing every person has in common is the hope that if they don’t benefit from treatment, they hope someone else will from their experience.
In 1998, virtually every myeloma patient thought they would die in five years. The things that others can learn from me, they reasoned, has to help someone else down the line. At least that was something.
In 2018, meaning of a diagnosis has changed. Not only will your treatment inform the treatment of patients in the future, there is a great likelihood that it will benefit you because you will live with this disease as you go about your life.
That’s where HealthTree comes in. First, help yourself.
Start a profile, enter your information and see what treatment options and clinical trials are available to you so you can make educated treatment decisions. The treatment options are personalized and include suggestions of how experts might treat a patient in your situation. Coming soon is HealthTree Connect, a mobile app linked to Apple Health that will allow you to auto-populate your to lab data from your office visits.
Add your myeloma genetic test information and learn what those test results mean for you personally.
Document your prior treatments and side effects so you can later see reports on treatments that were the most effective for other patients, or how they alleviated their side effects. Update HealthTree after every myeloma “event” whether it happens inside or outside of the doctor’s office and keep all of your key myeloma information in one place.
Print out your treatment options and bring them to the clinic to have an informed conversation with your doctor. Make notes about things you’d like to ask and include your questions in the conversation. Do your homework about some of the concepts you need to know about. Repeat at least a couple times of year.
Second, help your physicians (and nurses, social workers, lab technicians, you get it) by bringing along your summary so that you can use it as a discussion guide and prompter. Ask them about your range of options and what he or she advises. Become comfortable with the fact that you are a partner, not just a consumer, of your health care. Soon you will be able to provide online consent to your doctors so they can see your HealthTree profile.
Third, help yourself and other patients by finding your “twin” or patients who share some of the same side effects, genetic characteristics or treatment histories with you. It is a new form of patient experience crowdsourcing that can also help physicians to refine their treatment strategies for each patient.
Finally, your anonymized data will be made available in reports to both you and researchers, something even more valuable at a time when personalized medicine is the goal. Your data can be used to identify patients who are doing well on treatment , or optimal treatments for specific patient populations. This learning will generate new hypotheses and inform ongoing studies.
Over time HealthTree has the capacity to collect data for research, such as the impact or effects of being on a drug for long-term maintenance. Other issues like fitness, frailty, diet, exercise and quality of life can also be studied the more people use HealthTree.
Perhaps the most exciting part of HealthTree is that it will be updated by myeloma experts every six months (to coincide with ASH and ASCO meetings) and can be adapted to the changes in myeloma research and treatment.
HealthTree is the first time that many patient tools have been aggregated into a single place. Our focus is a cure for multiple myeloma. So please share this article and invite a friend to join HealthTree today!