Sarcoidosis is a complex disease. Inflammation from sarcoidosis can affect the lungs, skin, eyes, heart, lymph nodes, and even the brain. Patients with sarcoidosis may have to see many different specialists to reach a diagnosis, and continue to see many different doctors for treatment. And when patients have to see many different doctors, they will accumulate a lot of medical records and health data.
For many patients the ability to manage their health data is a core part of how they manage their disease. Seeing different doctors at different hospitals often means it is up to the patients to be sure their medical records are travelling with them from one visit to the next. The ability to see the “big picture” is often a key for patients to own their disease as well as for doctors to ensure they are making the most appropriate treatment decisions.
A patient’s health data is also key information that contributes to medical research and the ability to develop important new medicines. There are many types of research – from understanding the natural history of a disease to clinical trials testing possible new therapies. The fuel for all of this research is patients and their data.
Some patients choose to actively join research studies. When they do, they share data through interviews and evaluations done by the medical staff at a research site. But tools are now available that make it easy for more patients to help support research by sharing their data – even if they are not available or eligible to join a particular research study.
Through disease registries, patients can choose to share their data to advance research. Sharing data with a disease registry can take time (depending on just how many questions may be asked), and patients should ensure they are familiar and comfortable with privacy procedures and policies related to how the information they provide is shared. But the data that is made available can often be a critical tool for researchers to understand a disease, as well as for advocacy groups to help impact policy on behalf of patients.
You can find tools on-line to help you manage your health data – including how increasingly your doctors can share electronic versions of your health records with you – at sites such as My Health Record (Australia) and Manage My Health (New Zealand). And patients with sarcoidosis can now share their data with a registry introduced by the US Foundation for Sarcoidosis Research.
I believe in the power of data. I control my health data to manage my health and that of my family. But I also rely on data every day as a clinical researcher at Pfizer. And I am grateful to the patients who chose to share their data before me – the data they shared will power the next generation of new medicines.
Craig Lipset is Head of Clinical Innovation at Pfizer Worldwide Research & Development. He serves on the Board of Directors for the Foundation for Sarcoidosis Research, as well as the MedStar Health Research Institute.