Patient engagement in The Metastatic Breast Cancer Project

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Published: 4 Jun 2016
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Dr Nikhil Wagle - Dana-Farber Cancer Institute, Boston, USA

Dr Wagle speaks with ecancertv at ASCO 2016 about The Metastatic Breast Cancer Project, an online outreach project connecting advocacy groups, social media and more than 2000 patients.

About 10% of breast cancer patients have metastatic breast cancer when first diagnosed, and as many as one third of all patients will develop metastatic breast cancer at some point, but only a small fraction are treated at centres which carry out research on tumour samples.

In signing up through the website, patients are asked questions about their cancer and treatments, and can give consent to have researchers obtain their medical records and collect specimens, of stored tumour samples and using a mailed collection kit to provide DNA samples.

With over 2,000 patients engaging with the site, Dr Wagle describes the value of upstream public dialogue in fostering stronger relations between researchers, primary care providers and patients.

Watch the press conference or read the news story for more.

ecancer's filming at ASCO 2016 has been kindly supported by Amgen through the ECMS Foundation. ecancer is editorially independent and there is no influence over content.


ASCO 2016

Patient engagement in The Metastatic Breast Cancer Project

Dr Nikhil Wagle - Dana-Farber Cancer Institute, Boston, USA

I’m here at the conference to present our work on The Metastatic Breast Cancer Project.

Could you tell us more about that?

The Metastatic Breast Cancer Project is a study we’re conducting, it’s a national direct-to-patient approach which engages patients using social media and advocacy groups and empowers them to help us accelerate metastatic breast cancer research by sharing their tumour samples and their medical information.

What is the process of using the website?

Last year we worked with patients and patient advocates and advocacy groups to develop a website, it’s, and the website explains the project, it asks patients do you want to help us transform our understanding of metastatic breast cancer? And they can read about the project and if they’re interested in participating they click a button that says, ‘Count me in,’ and they give us their contact information. We launched this in October of 2015 and in the seven months since we’ve launched more than 2,000 women and men from all fifty states in the United States have signed up as well as some people in other countries.

What kind of responses are you getting in terms of actual usable samples?

When we started this seven months ago our focus was on engaging patients and then several months ago we started sending out consent forms. So over the last several months we’ve sent consent forms to all of our enrolled patients and more than 1,100 patients have given us permission to go and get their medical records and get their tumour samples. About two months ago we started sending out saliva kits to consented patients and to date we’ve received about 500 saliva kits and we’ve only just started getting medical records and tumour samples over the last month or so. To date we have well over 100 medical records and dozens of tumour samples but we expect over the next six months that’s going to be our focus is now obtaining and analysing the tumour samples.

From a more patient-focussed perspective what kind of involvements are you seeing from this upstream engagement?

The engagement from the patients has been really incredible. There is a tremendous community of metastatic breast cancer patients who are very interested in helping advance our understanding of this disease and helping develop new treatments and treatment strategies. So this is really turning into a patient driven research movement where patients are promoting the study, telling other patients about it and posting pictures of themselves, posting selfies of themselves with their saliva kids on social media. So this is really what we intended was for this to be a partnership between researchers and patients and so far it’s playing out that way.

Have there been any limits to access?

In general we’ve created a pretty low barrier for patients to participate. They need to be able to access the website and fill out their information. So in that sense it’s pretty widely available to people who know about the project and who are able to access the website. Two limitations right now that we’d like to address, one is the website is in English and we’d like to translate the website into other languages and be able to appeal to people who speak different languages. The other is getting the word out. So people who know about the project or hear about it from an advocacy group or are on social media may learn about it and be able to go to the website but we’d like to reach other communities who may not have heard about the project yet so that they can participate as well.

Is this kind of patient involvement something that you’d like to see moving forwards with other outreach engagements?

I would love patient engagement and patient driven research to become more of a paradigm, not just for the type of research we’re doing where patients are donating samples and they’re donating their tissue for research but really to see this move into therapeutic clinical trials or other types of interventional trials where there’s bidirectional movement – patients can share information and share samples with researchers and clinicians but clinicians and researchers then can give something back to patients and potentially even help enrol them on treatments.

One of our goals in engaging patients is to be able to give something back. Right now we’re doing the sequencing studies in a research lab, the point of that is for discovery and for us to be able to develop new treatments. We’re not right now doing a clinical test on their tissue samples and giving it back to them. So what are we giving back to them? What we’d like to do is we’d like to engage them about what we’re learning from the research, what are the latest developments in metastatic breast cancer research? What have we found? And to do that we really… one of our major goals is to translate the scientific discoveries into information that people can digest easily. We are working on that and we have not formally engaged science communicators although that’s a really great idea. We’ve engaged patients to help us translate them and, in particular, patients that are good at this are patients who are patients but also have scientific backgrounds. So far they have been the greatest resource in helping us translate to our patients.

There was an article that came out late last month about a large proportion of Americans, when questioned, said that they wouldn’t participate in a clinical trial. Was that something that you had heard of and how would you address that with these results in mind?

The number that we hear often quoted is that less than 5% of adults in the US participate in clinical trials. A lot of that is because they don’t have access or because they’re not offered a clinical trial but there is a large percentage of patients who may not understand what a clinical trial is about or what the goal of a clinical trial is or may not be interested in participating in a clinical trial because of lack of patient engagement. So that low number does concern me and I’m hopeful that by engaging patients, by including them in the research, by including them in the types of questions we’re asking and, importantly, in the trial design we will be able to increase that number, the percentage of participants.

I suppose a lot of those participants would be informed and become involved through their primary healthcare providers. Is there anything that you would like to put out there as a call to action for anyone watching this from a clinical setting or healthcare providers who might be wanting to get involved with this to bring their patients into the project?

The general concept, there’s obviously a physician-patient partnership, by definition as part of that role, but thinking about the researcher-physician-patient partnership is one that we’re really trying to explore and encourage. If patients feel that their physicians are engaged in the types of research that we’re thinking about, if physicians feel like there’s a relationship between the researchers and the patients, that kind of ecosystem can really help benefit future discoveries.