Patient-Driven Research: You Have the Answers!

Patient Expert

A scientist in a laboratory has an idea about what might make a cancer spread.  A doctor notices several of his patients have a similar side effect from a drug.  Then people in laboratories set up experiments and clinical trials.  But no one has usually asked the patients about their experiences or ideas.  Two new research projects are turning this model around.  Patient-centered research is finding its way into scientific conversations.  No Lump Required and the  Metastatic Breast Cancer Project are two examples of a new research model, not one that will supplant the old models, but that will supplement them.

No lump required for Inflammatory Breast Cancer

No Lump Required is a project developed by the IBC Research Foundation.  The name refers to the fact that most patients with inflammatory breast cancer (IBC) have no lump. The project involves an on-line survey that allows patients to enter information about their IBC experience.  Because No Lump Required is just one of several similar projects for other rare diseases, there are sections of general questions for epidemiological purposes.  One unusual feature of No Lump Required is that family members can also participate by entering information about a deceased relative.

The IBC Research Foundation explains the origins of the project this way, “Genetic Alliance brought together a group of disease advocacy organizations who are all interested in increasing the involvement of patients in research. In fact, we want patients to drive the research! Right now we’re one of only a couple of cancer-focused organization in this diverse group, but we all share a common goal….patient involvement in research.”

Surveys collect important data

Many patients have participated in surveys about their experiences.  One way No Lump Required is different is that the IBC specific questions were developed by a patient advocacy group in collaboration with a medical advisory board and other experts.  Since 1999 the IBC Research Foundation has been working directly with patients and the research community, so it is uniquely positioned to know what type of data needs to be collected.

Ginny Mason explains some of the advantages, “A lot of research data comes from what the doctor or nurse records in the medical record. Data in No Lump Required is reported by the patient, getting a first-person account of the side effects, symptoms, and overall experience. Also, the majority of research comes from one institution where No Lump Required will gather data from across the U.S. and from outside, if the patient speaks/reads English.”

Patients are sometimes hesitant to participate in research surveys because they don’t know how their data will be used or whether their privacy will be preserved. The information collected in surveys often turns out to be a one-time thing.  The researcher uses the information to write an article or tweak a clinical trial, but then that information is no longer available to other researchers.

No Lump Required addresses both of these issues.  No Lump Required is a registry that researchers with the proper credentials will access for years to come.  They might look at the information to answer a specific question such as what was the first symptom IBC patients noticed.  Or they might be looking to recruit IBC patients into a research study.  People who participate in the registry can adjust their privacy settings to allow how much access to their information they wish.  For example, they might say they want their information to be used by only the IBC Research Foundation, or they might give permission for any researcher to use their data.  No matter what the privacy setting, all of the information is “de-identified” so that names and identifying data are not linked.

To assist people in thinking through the issues of access, three videos explain the options.  The videos feature me, representing ordinary IBC survivors; Ginny Mason, Executive Director of the IBC Research Foundation; and Dr. Neil Spector, cancer researcher at Duke University.

The Metastatic Breast Cancer Project examines genetic information

The Metastatic Breast Cancer Project, led by Dana Farber oncologist Nikhil Wagle, is a similar patient-driven research study, but one that uses tissue samples and medical records.  The website explains, “Your tumor and medical records could unlock discoveries. The unique genetic information in your cancer could hold the key to rapid advances in cancer treatment. By looking at the DNA in your samples, researchers can make discoveries that will ultimately lead to a better understanding and faster advances in the treatment of metastatic breast cancer. This information will be invaluable to cancer research for years to come.”

The Broad Institute of MIT and Harvard, a non-profit research institution, is working with Dana-Farber Cancer Institute, Harvard Medical School and advocacy groups to reach as many patients with metastatic breast cancer as possible.  This project is especially interested in understanding how specific genes are involved in metastatic breast cancer.  The information will be available for researchers from all institutions, not just MIT and Dana Farber.

I have been following the MBC Project on Twitter, and have been amazed at how quickly they are accruing participants since the launch in October 2015.  When I checked this morning 1,400 people had signed up with widespread geographical participation from every part of the United States.

Both of these projects offer a way for patients to be involved in research no matter where they live.  Everything can be done without traveling to a research hospital.

If you have IBC or metastatic breast cancer, you can help scientists change the future for cancer patients.  Your information, pooled with others’, has answers we need.

For Further Reading:

Inflammatory Breast Cancer:  Understanding IBC

Breast Cancer:  Where is it Most Likely to Spread?

Breast Cancer Awareness:  Understand the Numbers

Ten Plus Years Living with Metastatic Breast Cancer:  Inspiring Stories


No Lump Required.  IBC Research Foundation.  Accessed from February 18, 2016.

Metastatic Breast Cancer Project  Accessed from February 18, 2016.

Westervelt, A. Researchers Take Aim at Metastatic Breast Cancer. Wall Street Journal, February 15, 2016.  Accessed from February 18, 2016.