A call to the rare disease community: ​Don’t stop sharing your experiences! Reconsider WHERE you share them

Picture of Maria Picone
Maria Picone

In light of recent reports concerning privacy violations of millions of users’ Facebook data, patients and caregivers are telling us that they are nervous to discuss private matters on social media. As the mother of a child with a rare disease, I fully understand your concerns. However, we implore you: Do not stop! Reconsider where you are posting and find private spaces for private matters.

Why? When patients and caregivers share their experiences about their disease, its progression, possible treatments and under-recognized symptoms amongst themselves they are creating rich data that companies like TREND Community can analyze to accelerate the discovery of promising treatments and bring them to market faster.

How does TREND protect my privacy?

  1. Names and other personally identifiable information are always removed before we perform our data analysis.
  2. Our reports only include summaries of community data (for example, symptom frequency and treatment preferences).
  3. The output cannot be linked back to individual participants and individual experiences are never shared without permission.

How does TREND Community secure my data?

  1. You must sign a consent form when joining TREND Community granting us permission to use your data as this is a requirement of many research activities conducted on and off our platform. Participant consent is not obtained on social platforms such as Facebook.
  2. We actively seek partners who will use your data to benefit your community.
  3. We never monitor your online search behavior.
  4. We never share personally identifiable/profile information without your permission.

How can my conversations help research?

Using computer algorithms, TREND performs an analysis of patient and caregiver discussions on social media to gain valuable insights into community perspectives on living with rare disease and a better understanding of the natural history of the disease. Our technology can quickly analyze vast amounts of data from years of discussions and identify important trends. These data can be used to generate hypotheses, sparking research interest in previously under-served patient communities.

Does TREND Community sell my data?

Yes, selling de-identified community experience data is part of our business model. We foster collaborations between our rare disease communities and the companies/organizations whose products and services are focused on helping them. As part of these efforts, we may sell summary data about your community to our partners to help them better understand your disease, perspectives and priorities (for example, risks and benefits) so that they may develop or repurpose products that demonstrate promise for the diagnosis and/or treatment of rare diseases or conditions.

Are there any risks to sharing my data?

We ask that our participants use discretion when conversing with others online. When sharing information about your diagnosis or health, there is always a risk that someone could use this information against you. Despite the risks, we hope that you will choose to participate in these important conversations because we believe that the more health information you share, the more we can advance science and improve your life and the lives of patients and caregivers living with your disease.

Founded by parents of a child with a rare disease, the mission of TREND Community is:

To accelerate the search for treatments, interventions and cures while improving the quality of life for individuals living with rare disease.

Follow us on social media @trendcommunity!