Sharing Your Patient Data
What we know about DIPG DMG today has been most influenced by the patient data and tissue shared by families with institutions, industry partners and data repositories. Only families can make this selfless decision. Your experience motivates other families to do the same.
What You Should Know About Sharing Patient Data
Origins of Sharing Patient Data
There was a time not too long ago when a patient could not freely share his or her medical records including imaging, pathology reports and functional assessments. These records became known as “patient data,” which is critical to researchers and even advocates hoping to provide better treatment options and an easier path for patients.
Patient advocates caused changes to laws, regulations and policies and paved the way for the many opportunities you have today to share your patient data with providers, other patients and researchers. While it is helpful to have rules making it hard for patient data to be shared without your permission, it is important that with your consent this very important information can be accessed and utilized.
Deciding Whether to Share Your Patient Data
Deciding whether to share your data requires you to deeply consider the benefit vs. the potential risk to you, your family or other patients. For instance, does someone knowing your loved one has or had DIPG cause you pain? Is there anything about certain records you do not want revealed? Do you want to know who receives the data and when it is received? Do you only want to share patient data with those who will take off all identifying information, even if this means you cannot later know whether your patient data was used in research or research publications?
Sharing patient data takes various forms, and continues to evolve with new policies and regulations added each year. Many data sharing efforts do deidentify the data so it cannot be retraced to an individual patient. Options to tag the data are emerging so that you can retrace your loved one’s journey and understand how their patient data is being used in research. Many families feel this brings a better understanding to their own journey while helping scientists move closer to curative treatments.
Options for Sharing Your Patient Data
The broadest sharing options make patient data, such as images and clinical records, available to scientists in industry, academia and for sharing through NIH and NCI efforts. Those creating these data repositories aim to use your patient data in comparison and contrast to others with DIPG DMG, other cancers, other illnesses or others who have no known health concerns. Researchers want to know whether DIPG DMG has treatable, preventable or recognizable characteristics their research can improve.
Other repositories or data networks are not as able to fully share data due to institutional policies or guidelines based on the source sharing the data. These rules are designed to protect patient data. Repositories receiving the patient data directly from providers believe this results in the purest data. Over time we have found it can also delay transmission of the patient data by weeks, months or years. Repositories may deidentify the data being received in order to keep it as pure as possible. Unfortunately, this results in the inability to fully trace the use of your loved one’s data. Often repositories are designed for specific purposes such as analyzing multi-omic data and are located at centers of excellence or are part of the government funded effort to analyze patient data.
Recommended Options for Donating DIPG DMG Data and Tissue
One of the DIPG DMG Research Funding Alliance (DDRFA) goals is to further efforts to increase meaningful data and tissue available to fuel DIPG and DMG research. Currently, DDRFA has made grants to two trusted partners. Each serves a different but overlapping purpose, making sharing with both ideal. You can provide consent to share patient data while your loved one is fighting DIPG DMG, and in some cases soon after.
Children’s Brain Tumor Network (CBTN) is one of the most connected repositories of patient data and tumor related tissue utilized by researchers all over the world. When you consent to a clinical trial, access the DIPG DMG National Brain Tumor Board, or donate tumor tissue through a CBTN partner hospital, your patient data becomes available throughout the government data ecosystem. Those skilled to use this data for discovery in academic, government and contributing industry partners can utilize it fully. Further, the team at CBTN assists scientists with accessing needed data. Currently, CBTN is most focused on multi-omic information and continues to build its clinical record and imaging data bank.
Participating in xINFORM by xCures is the most direct way to give this invaluable information to the broadest group of researchers. xINFORM provides the opportunity to learn the most about how ongoing research relates to your loved one’s tumor. While the government’s ever-evolving patient data ecosystem continues to grow, other patient data repositories like xINFORM focus on comprehensive structuring of a patient’s data and filling the gaps on what patient data is available. xCures allows industry to license use of its patient data. It then uses the license fees to invest in innovation to hasten the pace of creating structured patient data to guide researchers. xCures also returns a portion of any licensing fees back to DDRFA to fund additional DIPG DMG research grants. When you share your patient data with xINFORM, you give your invaluable information to the broadest group of researchers. Once you consent, your data remains available to you and others with whom you choose to share it.
Guiding Future Discoveries
Through gifts of tissue, cell lines are made which are implanted into mice to study how pathway mutations, like TP53 found in H3.3K27m mutated cells or P13K found most often with ACVR1 mutated cells, respond to treatment ideas. Using patient data collected to discover common attributes, responses to trials and rates of tumor progression add more context and improve prediction. Recently, researchers determined that the best mouse models would actually be created by implanting tumor tissue directly from a biopsy, donated by a DIPG DMG patient, straight into the mouse. This leads to exciting opportunities ahead for mice to lead the way in discovering agents to prevent these tumors and disrupt them when forming and growing.
It is exciting to imagine a day very soon when a provider will receive patient imaging and biopsy results in real time and be able to use mobile access to compare a patient’s tumor with everything known about DIPG DMG. This includes the best treatments to date for the specific attributes of that tumor, published research and patient assessments. Through structuring of patient data and collaborations continuously building on discoveries, there will come a day when parents will no longer fear what DIPG DMG can do to their children.
Within the Tough2gether Online Community you will find forums discussing patient data discoveries. You can ask questions, share your opinions and add new information. We encourage you to learn more and speak up on the topic of patient rights in data sharing. Voices just like yours made it possible to share precious patient data, leading to the discoveries widely available today.