Ever since I donated my first biospecimen about two decades ago, I’ve been an avid proponent of patient data collection. My data helped save my life, and our data collection efforts at the Multiple Myeloma Research Foundation have helped extend the life expectancy of many other multiple myeloma patients.

Now, at the Harvard Kraft Precision Medicine Accelerator, we’re working to share best practices and help improve patient data collection surrounding all cancers and other diseases. This is why I participated in a panel called “Your Data Can Save Your Life” at this year’s The Atlantic People vs. Cancer conference last week. I was honored to share the stage with Dara Richardson-Heron, the Chief Engagement Officer of All Of Us at the NIH, and Andrew Norden, Chief Medical Officer of COTA, a data science company. What struck me most throughout the conversation wasn’t the areas where we all agreed (and there were many), but the instances where Dara and Andrew said something that made me stop and reflect on a simple question: When we talk to patients about their data, what is the key point that we want them to remember? 

The answer (of course) is that there isn’t one point. There are many, and each of those reasons is an equally important for patients to understand:

1. The point of data is to cure an INDIVIDUAL’S disease: Your specific genomic data can help you (and your doctor) determine which drug is best for you, if you should try a combination of three drugs instead of two, and even if surgery is the best course.

2. The point of data is to cure EVERYONE’S disease: Gathering and analyzing copious amounts of patient data allows us to build the context needed to spot trends, identify risk factors and understand the biology of the disease itself. This leads to breakthroughs.

3. The point of data is to be INCLUSIVE: Of course, we can’t treat everyone’s disease if our data sets don’t represent everyone. As Dara pointed out, we need the data of patients from all walks of life. The data must be diverse, because patients are diverse.

4. The point of data is to be USABLE: We need data that will help doctors answer a question that, as Andrew noted, many patients need to know: How many patients like me have you treated? If we set up the data registries in the right way, doctors will be able to answer that question with real numbers and use the data of similar patients to inform treatment plans.

5. The point of data is to EMPOWER patients: Many patients donate their data because they want to help others. But we once we have the report on a person’s data, we can actually arm that patient with information they can use to take control of their treatment and long-term healthcare. 

At the end of the day, the primary point of data is to have enough of it to drive cures. Unfortunately, current methods for collecting patient data are too siloed and too fragmented. Groups like the MMRF, COTA and All of Us are leading the way in helping patients donate their data in safe, secure and accessible ways. I’m honored to work with both of them as we continue to share our knowledge and best practices with the industry.