We recently caught up with Dr. Jonathan Hogan from University of Pennsylvania who explained why he thinks it is important for patients to add their voices to consortia studies and patient registries.
See below for our Q&A with Dr. Hogan!
Q: How would you define consortia?
JH: Consortia are groups of institutions, businesses and individuals that come together to achieve a common goal. In the case of health and medicine, consortia are often formed to promote the awareness, understanding, research and treatment of certain diseases.
Q: There are several groups of researchers building this consortium model (and patient registries )- why is it important for all of these researchers to be collecting patient data?
JH: Obtaining data is the most important step in research. Without data, researchers cannot answer questions that they have about the diseases they are studying. Patient registries are one of the most effective ways of obtaining data. This is particularly true for rarer diseases, for which finding patients and obtaining the data on how their diseases has affected them and responded to treatment (for example) can be very challenging.
Q: Why should patients care about the consortia that are happening?
JH: As the theme of this article suggests, there is strength in numbers. This statement is true for many reasons.
- The larger the amount of affected patients, the larger the effect on public health. This draws attention to the disease and the importance of getting behind research.
- With more patient data, more questions can be asked and answered about these diseases.
- There is only so much attention and resources (money) to be spread around in disease research. The more “visible” the disease is (through participation in research studies, registries, fundraising, advertising their disease and lobbying lawmakers), the more attention (and money) will be devoted to it.
Q: How can patients get the most out of their experience while participating in a consortium?
JH: Being engaged with the consortium allows patients to get the most out of their experience. In the age of the internet and social media, there are more options than ever for patients to get involved. This may include participating in patient registries, advertising about their disease and need for research through word of mouth and social media, and attending events in person that focus on their disease. Support groups also are a great way for patients to interact with other members of the community who are affected by these diseases and care about making a difference.
Q: In the big picture, can you briefly describe how participating in consortia contributes to new therapies and treatment options?
JH: Participating in consortia contributes to new therapies and treatment options by providing more data to both ask and answer questions for a specific disease. Without patients contributing their information and being aware of state-of-the-art research for a disease, it is impossible to move fields forward in the understanding and treatment of these disorders. Consortia provide a common arena where patients and researchers can convene to accomplish these goals. This is particularly important for rare diseases, for which finding enough patients to treat with new therapies is very challenging.
Q: What do you see for the future of this “big data” being collected in consortium?
JH: There is enormous potential in the collection of “big data”. Larger numbers of patients contributing their information allows for the use of novel approaches to the understanding and treatment of diseases. In the age of the internet and social media, consortia have a unique opportunity to collect and analyze data from patients worldwide.