Innovative direct-to-patient outreach may accelerate breast cancer research
Dr Nikhil Wagle - Dana-Farber Cancer Institute, Boston, USA
Good morning everyone. I’m delighted to present this morning an overview of our study, the Metastatic Breast Cancer Project, a national direct-to-patient initiative to accelerate genomics research.
Metastatic breast cancer is breast cancer that has spread beyond the tissues of the breast. An estimated 150,000 women and men in the US are living with metastatic breast cancer. The median survival is about three years and more than 40,000 people die annually, accounting for 7% of all US cancer deaths. Although treatments are improving metastatic breast cancer is currently not curable. In order to make advances in our understanding of metastatic breast cancer we need to be able to study tumour specimens from patients, ideally tumour specimens that are linked to clinical information. The challenge has been that most tumour specimens are not available for these types of studies, largely because the vast majority of cancer patients are treated in community settings which don’t do these types of research. In fact, most patients have never been asked if they’d like to contribute a tissue sample or medical information for biomedical research.
To address this we’ve launched the Metastatic Breast Cancer Project, a direct-to-patient nationwide study to engage patients via social media and advocacy groups and empower them to accelerate this type of research by sharing their samples and clinical information.
Working with a number of patients, patient advocates and patient advocacy groups we developed a website you can see here, MBCProject.org, that asks patients, ‘Do you want to help transform our understanding of metastatic breast cancer?’ Interested patients can come to the website, learn about our project and if they are interested click, ‘Count me in,’ and provide their contact information. We launched this website in October of 2015 using Twitter and Facebook and the help of numerous advocacy organisations to reach out to patients with metastatic breast cancer. In the first seven months since we’ve launched more than 2,000 patients from all fifty states have enrolled in this study. In addition to providing their contact information 95% of these patients have provided detailed information about their cancer, their treatments and their experiences. Importantly this database of 2,000 patients has allowed us to identify groups of patients to study, in particular rare patients that have been particularly challenging to identify using traditional approaches. This includes exceptional responders which are rare patients who have unexpected dramatic responses to therapies. It also includes patients diagnosed at a very young age and patients who have metastatic disease as their initial diagnosis.
The overarching goal of the Metastatic Breast Cancer Project is to accelerate discoveries that will lead to new treatments and treatment strategies for this disease. This is our approach: once patients have signed up we send them an online consent form that asks for their permission for us to obtain copies of their medical records and to perform sequencing studies on their tumour and germline DNA. Once patients consent our team requests copies of their medical records and then obtains portions of their stored tumour tissue. Patients mail us a saliva sample using a kit that we send them. Tissue samples then undergo genomic analysis in our research laboratory and the genomic information is analysed in the context of clinical data in order to help improve our understanding of metastatic breast cancer. Importantly, all of the de-identified clinical and genomic data that we generate in the study will be shared widely for other researchers to use so that the tissue and data donated by patients may be used for multiple studies.
As we have been collecting clinical information and sequencing tumours and analysing data, we’ve also seen an emerging social movement that emphasises the partnership between researchers and patients. Over the past few weeks we’ve been seeing more and more of these selfies where patients are saying, ‘Count me in,’ and showing pictures of themselves with the saliva kits. I’ll read just four brief quotes from some of our participants.
One says, ‘I want to live and watch my children grow up but if I can’t then I want to leave a legacy and a cure.’
‘As someone who does not live near a research centre and therefore cannot easily participate in trials, I feel like I can finally contribute.’
‘Amazing how happy that little box makes you feel, I felt like a two year old – let me help. I feel a sense of pride and belonging because of this.’
And finally, ‘The Metastatic Breast Cancer Project giving us hope for the future and, if not for some of us, for our families.’
In conclusion, partnering directly with patients through social media enables the rapid identification of thousands of patients willing to share tumours, saliva samples and medical records to accelerate research. In particular, the study enables the study of rare patients like exceptional responders who are otherwise challenging to find with traditional approaches. We intend this to be a shared resource for all researchers so that all clinical and genomic data generated in this study will be shared widely. Finally, this is a proof of concept study that we hope will serve as a model for patient driven research in other cancer types. Thank you very much.