Using Real-World Data to Improve Treatment for Patients with Multiple Myeloma

In August 2023, Alan Stephenson created a digital members map for the Multiple Myeloma Warrior Community. His intention was to provide a way for warriors to connect, support each other, and be in fellowship in their local areas. Before too long, there were over 1000 warrior pins, from around the world, pinned to the map.

Alan was also networking with researchers who collect and study data from Multiple Myeloma (MM) patients. He was happy to join the research groups because he knew his participation would increase awareness and knowledge about the disease and its treatment.

Earlier in 2023, Weilin Meng, founder and CEO of Polygon Health (PH), started a company that uses technology, information, and the internet to transform a patient’s health data into a health asset. In a previous role, Weilin was a senior director of data science at a large pharmaceutical company. While there, a colleague of his developed cancer. Weilin found it ironic that his colleague did not have the decision-making powers to determine what happens to her own data. This unfortunate situation inspired Weilin to start PH in January 2023.

Eventually, PH was given research funding to study MM patients who had received CAR T-Cell Therapy. In their patient search, Weilin came across a segment of The Patient’s Story, featuring Alan Stephenson. Alan’s story resonated with Weilin. Later, he reached out to Alan, the two met, a relationship formed, and today, PH is building the Warrior Community, as Weilin puts it, “a better map.”

A key feature of the better map is an input area for demographic data. Along with patient’s current age, age at diagnosis, and race/ethnicity, other facts about where MM patients lived during their growing years, past/current occupations, and family history, will also be recorded.  This information is critical to a better understanding of the disease. The sheer volume of hard data collected from the community will be an asset to this understanding.  

In addition to building a better map, Weilin thought about the health care data Warriors accumulate during their MM journey. He thought about his colleague who did not have access to her cancer data. He thought about the 21st Century Cures Act of 2016 that mandates all people have unrestricted access to all their electronic health information (EHI).(1) And, being a data scientist, Weilin thought, “I can build an app for that.”

Although using a mobile app to view lab results, scans, images, and to interact with providers may be commonplace today, in most cases, the entirety of the patient’s data is not available on the app. Consequently, this practice does not align with the Cures Act mandate that specifies all individuals have “unrestricted” access to all their EHI.

To ensure all patients have unlimited safe secure access to their EHI, the U.S. Department of Health and Human Services has designated five organizations as Qualified Health Information Networks (QHIN).(2) These networks interact with one another and allow transmission of data for patients, providers, hospitals, health systems, payers, and public health agencies. More of these networks are being developed, and like the present five networks, new networks will need to undergo rigorous onboarding.

The PH mobile app will offer Warriors personalized secure access to all their EHI. If a Warrior chooses to use the app, they will designate PH as an “agent” for their EHI. The app will “find” your EHI amongst the QHINs and deliver the data to you via the app. See the flow chart in the Figure below, for a visualization of this process. Of note is the cost for the app – it will be free!

FIGURE Flow of data from patient EHR to personal PH app. HER, electronic health records; QHIN, qualified health information network; PH, Polygon Health; EHI, electronic health information.

In addition to offering MM patients a way to take control of their EHI, the app will also have information about opportunities to help providers, researchers, and patients alike. You may be wondering how your EHI could help others, and yourself. Keep reading.

Electronic health information is data related to patient health status and/or the delivery of health care. When studied in this relationship, EHI represents real-world (RW) data, as opposed to data obtained from a clinical trial. From RW data, researchers, biopharmaceutical companies, providers, and data scientists can extract meaningful insights and conclusions, or real-world (RW) evidence.

For example, MM is a disease with several different subtypes and varying genetic makeups. The disease is also diagnosed at different stages and sometimes with complications like renal impairment. And, although recent advances in therapy have improved outcomes, not all MM patients are benefiting as much as others.(3) 

To understand this dilemma, data scientists like Weilin Meng group patients with similar disease features (RW data), such as renal impairment or a high-risk genetic component, into groups called cohorts. Then, he can study treatment outcomes for the cohorts taking the same medication and understand how the same treatment affects cohorts differently (RW evidence).   

Real-world evidence also adds to information learned from clinical trials and provides a greater understanding of treatment patterns and their effect on patient outcomes in everyday practice.(3)

Weilin is also interested in understanding the patient’s journey and how it affects access to treatment. Sometimes, researchers want to know the barriers of access to treatments and the challenges throughout the patient’s journey to better understand how to improve the treatment experience.

The Warrior’s RW data can also help researchers understand how treatments affect quality of life and the cost and benefits of the treatment for the patient. This evidence would help insurance companies to expand approvals and coverages.

The availability and analysis of RW data have greatly contributed to the generation of RW evidence, hence supporting the development of recommendations/guidelines closer to real-life experience.(4) Weilin Meng agrees with this statement and believes a patient-centric approach, based on RW data from EHRs, insurance claims and other sources, will fill a huge research gap in the study of MM.

Real-world data and RW evidence are predicted to play an increasingly important role in healthcare research and decision-making in the years ahead.(4) Blaze the trail and share your RW data with Polygon Health. You’ll be helping yourself, others with MM, providers, and researchers alike!  

References

1.      21st Century Cures Act. H.R. 34,114th Congress, 2016. https://www.congress.gov/bill/114th-congress/house-bill/34/text. Accessed April 5, 2024. 

2.      HHS Marks Major Milestone for Nationwide Health Data Exchange. https://www.hhs.gov/about/news/2023/12/12/hhs-marks-major-milestone-nationwide-health-data-exchange.html Accessed April 6, 2024. 

3.      Richter J, Pan D, Salinardi T, Rice MS. Real-world multiple myeloma front-line treatment and outcomes by transplant in the United States. EJHaem. 2023 Aug 4;4(4):984-994. doi: 10.1002/jha2.739. PMID: 38024614; PMCID: PMC10660406. 

4.      Malagola M, Ohgami R, Greco R. Editorial: Real-world data and real-world evidence in hematologic malignancies. Front Oncol. 2023 Jun 9; 13:1232980. doi: 10.3389/fonc.2023.1232980. PMID: 37361576; PMCID: PMC10289287.