Like most other 30-somethings across the country, Alisa Rouse pulls her smartphone from her pocket dozens of times a day, to check email, text friends, and call family. But also to log her symptoms as they occur: headaches, fatigue, itching, pain, and more.
Alisa lives with polycythemia vera (PV), a rare disease that causes the body to produce too many red blood cells, which in turn thickens the blood. This thickening causes the uncomfortable symptoms of PV. Diagnosed at the age of 16, Alisa has likely had the condition since birth—a rarity, since most patients develop PV later in life.
People with PV undergo regular blood draws to keep their number of red blood cells closer to normal. They also sometimes need to take medications to suppress blood-cell production. Alisa has to go to the doctor’s regularly for blood tests, to make sure her treatments are keeping her disease as manageable as possible.
For years, she tried to track her symptoms and understand when they occurred in relation to her treatments, but found the process overwhelming. She tried a homemade spreadsheet, which required her to remember everything she had felt during the day when she was at home at her computer in the evening. Using a paper calendar posed the same problem, especially when she was feeling sick for days on end.
Finally, in late summer of 2017, a website called Voices of MPN, developed by Incyte Corporation, launched an online program called the PV Tracker Tool. The program allows Alisa to log her symptoms in real time from her phone, tracks changes in her blood counts over the weeks and months, and graphs all this information together in easy-to-read printouts for her doctor. The two can then sit down to review the feedback from the program to determine whether her current treatment schedule needs tweaking to keep her symptoms under control.
“As simple as the program is, it really covers what we patients need,” says Alisa. “And since most of the people with PV are older, simple is going to be the best thing for them,” she adds.
PV isn’t the first disease to get phone-based tracker app. Another example, called MyRA, has been available for patients with rheumatoid arthritis since 2013. Rheumatoid arthritis is an autoimmune disease that causes inflammation and pain in the joints, often affecting people’s ability to perform even simple tasks of daily living, like getting dressed or cooking dinner.
Developed by Crescendo Bioscience, which manufactures a blood test to measure rheumatoid arthritis disease activity, the app is free for patients to use. It lets them record where in the body they feel pain throughout the day, using an animated human figure on their phone’s touchscreen. It also lets them rate how that pain is affecting their ability to perform a range of activities, on a four-point scale from “easy” to “no way.” The app then generates summary reports on demand that patients can forward to their doctors. Patients can even discuss results and share solutions in a MyRA social community on theRAConnection.com – a leading social community and educational resource for individuals with inflammatory arthritis.
In this era of smartphones, fitness trackers, and instant communication, the time is right for technology to make greater inroads into patient care across all areas of medicine, explains Leslie Saxon, MD, executive director of the University of Southern California Center for Body Computing. “Many of the tools, software, and sensors we can use are already out there, and we can port them to medicine,” she says.
Feeling Better, Living Longer
Studies of simple yet useful technologies to improve patient care are starting to show that they can do more than make patients’ lives easier—they can also make them longer.
For example, in the summer of 2017, results from a clinical trial showed that using a web-based system to let patients report their symptoms in real time during chemotherapy for advanced cancer improved their survival by as much as some new anti-cancer drugs.
In that clinical trial, researchers split more than 750 patients into one of two groups. One group had their symptoms managed in the standard fashion: by reporting them at regular visits to the clinic, and calling the doctor’s office if they had any concerns.
The other group was taught to use the online system that collected information continuously during treatment for 12 common symptoms of chemotherapy. When a patient reported a symptom that was severe or seemed to be getting worse over time, the system generated an alert that prompted a nurse to call the patient, instead of vice versa.
The researchers had expected the reporting system to help patients feel better during treatment. But at the end of the study, they also found that those using web-based reporting lived an average of 5 months longer.
“If this were a drug that had a survival advantage of this magnitude, it would be priced at $100,000, and we would ask how…we get this into our practice,” said Harold Burstein, MD, of the Dana-Farber Cancer Institute in Boston, speaking about the results at the 2017 American Society of Clinical Oncology annual meeting.
The research team could not pinpoint exactly why survival improved with online symptom reporting. Possibly, by providing better symptom management, online reporting may have helped patients tolerate chemotherapy for longer.
The advantage could also be due to potentially dangerous side effects of chemotherapy being caught early. “That’s key to getting better outcomes” [in medicine in general]—picking stuff up early,” comments Dr. Saxon.
Sharing Cancer Experiences and Expertise
Today, social media allows people to share every aspect of their lives online, almost instantly. Websites allow people to rent out their homes, cars, and more to perfect strangers. The comfort that people feel with reaching out to others online has likely never been greater.
Several years ago, Tony Blau, M.D., then a hematologist at the University of Washington, tapped into this trend for a clinical trial he was working on, treating women with an advanced, aggressive type of breast cancer that had spread throughout their bodies.
As part of the trial, the researchers performed genetic sequencing of every participant’s tumors. They uploaded this genetic information to the cloud, all de-identified to protect patient privacy. Experts from around the world were then invited to look through the reams of data and suggest potential, individualized treatments for the women.
“It was very heartening that the experts would really try to help, and when they couldn’t, they’d refer on to others around the world who could,” remembers Dr. Blau.
Inspired by the experience, he had started to think about how to expand the project when he himself was diagnosed with cancer. In April 2015, Dr. Blau became a patient with multiple myeloma, a type of blood cancer.
The good news for Dr. Blau was that multiple myeloma “is an area where there’s been really breathtaking progress in treatments over the last 20 years,” he says. The bad news, he adds, is that “no one really understands how best to apply those treatments in any given patient.”
Dr. Blau decided to use himself as a test case for a new web portal for cancer patients, undergoing the same in-depth gene sequencing as the women in his breast-cancer trial and putting his genetic and treatment information online at his new project’s website, all4cure.com.
All4cure features three interlocking communities. One is the patients, who put all their information about treatments they’ve undergone—and responses to their treatments—online, again de-identified to protect their privacy.
The second is a team of myeloma experts from clinics around the world, who answer questions from patients and their doctors as requested and review the information patients post online. The third comprises researchers who are looking for myeloma patients to join clinical trials of promising new treatments.
Like on Facebook or Instagram, patients can read and post a comment on other participants’ dashboards, sharing information they’ve gleaned from their cancer experience with others who might benefit.
“Everyone can see what everyone else is doing…so if I as a patient do something that seems to work well for me, then other people can be immediately aware of it,” explains Dr. Blau. “And if an expert has a suggestion for one patient, every other patient who’s facing that same issue could benefit immediately from that same suggestion,” he adds.
All4cure launched in March 2017, and while still in the proof-of-concept phase, has over 150 registered patients, with complete treatment dashboards for almost 80. The project has also signed up almost 30 participating clinical experts and more than 20 researchers.
“We’re still early on, but we’ve proven that people are willing to engage in this way, and we have a number of examples where people have unambiguously benefitted from their participation,” explains Dr. Blau. These examples include a patient who found that his myeloma has a rare genetic mutation that could be targeted with a drug more commonly used in melanoma, a type of skin cancer.
Throughout his career, Dr. Blau has noticed that patients want their experiences to help others with cancer whenever possible. When women in the breast-cancer trial that inspired All4cure were asked why they were participating, “their top motivations were that they hoped they could find something that would benefit them, and that their experience with cancer might be of benefit to others. Those were equally strong motivations,” he remembers.
Technology will not solve all of the problems encountered in the complexity of modern medicine. Some recent studies have shown disappointing results for high-tech solutions designed to help patients remember to take their medications, or to manage their heart failure, for example.
Dr. Saxon thinks that these are early days and that patients will become more engaged with health technology as they see the benefits, including feeling in control of their own health care and having a more equal relationship with their doctors.
For example, everyone at her center who gets implanted with a pacemaker automatically receives wireless monitoring of their device that sends early warnings of potential issues with the heart’s rhythm both to Dr. Saxon and the patient, “and we can intervene earlier,” she explains.
Research has shown that this type of continuous monitoring saves lives compared with standard follow-up visits at a doctor’s office, she adds, “and patients like the surety and confidence of knowing that we’re constantly monitoring them.”
Her team is now building software to layer on top of this monitoring system, which her patients are comfortable and familiar with, to let them track signs of other conditions common in patients who receive a pacemaker, such as heart failure and diabetes.
“When we allow patients to see their own results, whether it’s their blood glucose monitored continuously and wirelessly, or their blood pressure numbers…they tend to get more engaged in their care,” she says.
“And I think the more engaged you are in your own health care—the more you have a dog in the fight—the more you tend to partner with your care providers and the more your outcomes are improved,” she concludes.
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 Choudhry NK, Krumme AA, Ercole PM, et al. Effect of Reminder Devices on Medication Adherence: The REMIND Randomized Clinical Trial. JAMA Internal Medicine. 2017;177(5):624-631. JAMA Intern Med. 2017 May 1;177(5):624-631.
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