Using social media for public involvement in research
By Rebecca Pritchard
Spontaneous coronary artery dissection (SCAD) is a rare type of heart attack in young, healthy people. Usually, when a person has a heart attack, one of the blood vessels that provide blood to the heart muscle is blocked, often by fatty deposits in the blood vessel. In SCAD, a flap of the blood vessel lining comes loose and blocks the blood vessel, which causes a heart attack. We don’t know why this happens.
As SCAD is a rare condition, survivors can feel isolated and concerned about the future. Getting information, even from the medical profession, is tough because so little is known about the illness. Patients with this condition often turn to the internet to find out about their illness. Over the last few years, as more people use Facebook and Twitter, people who have had this type of heart attack have started to find and connect with each other. Rebecca Breslin, a SCAD survivor, set up a Facebook group that enabled more survivors to get in touch with each other, to offer and find mutual support. The self-titled SCADsters (a contraction of ‘SCAD sisters’ brought about as few men with SCAD got in touch) are from all over the UK, USA and Europe. Without this Facebook group they would struggle to communicate with each other, and they are using it to raise their questions, voice their concerns, share their experiences and ultimately find a voice with which to demand a response to the situation.
Some people in the group discovered the work of the Mayo Clinic in the USA and signed up to their research remotely. Around the same time, Dr David Adlam of the NIHR Leicester Cardiovascular Biomedical Research Unit at Glenfield Hospital wrote an article about the existing research into the condition. SCADsters found his article online, shared it with the Facebook group and quickly realised there was potential for a UK based research project.
Rebecca Breslin, the Facebook group administrator, happened to have Dave Adlam as her consultant cardiologist (heart doctor) and was able to speak to him in the clinic about the unanswered questions of the SCAD survivors, the research project at the Mayo Clinic and the idea voiced on the Facebook group of a UK based research project.
Dr David Adlam: “We are excited by this developing partnership between the Leicester Cardiovascular Biomedical Research Unit (BRU) and the Mayo Clinic to advance our understanding of this condition. This research programme has been driven by patients who have this condition but for years have been frustrated by a lack of meaningful research into SCAD resulting in a dearth of information on effective treatment and prognosis. The UK SCAD patients have been directly involved in setting up this programme and will be key to its continuing success.”
On 4 July 2013, a group of UK patients who had experienced a SCAD came to the Leicester Cardiovascular BRU to share their experiences of the condition, raise their unanswered questions and discuss research plans. They also heard about a website about the condition being developed by our in-house Informatics Team, which is now live at http://scad.lcbru.le.ac.uk/. This website enables survivors to express an interest in taking part in research projects, share their stories, provide information about the condition and access peer support. Colleagues from the Mayo Clinic also spoke about their research, and the questions that had arisen there. Together the research team and the SCAD survivors put together a very broad research project that would work towards answering their questions. A subsequent bid for British Heart Foundation funds was successful and ethical review completed for the SCAD Research Project.
Rebecca Breslin: “When I first started researching SCAD after my heart attack in March 2012, there were far more questions than answers. It was a frightening time. However, there was hope. The Mayo Clinic had just started some research and the American non-profit SCAD Research, Inc. had recently formed to raise awareness of SCAD and fund the research. To now have the Leicester Cardiovascular BRU on board is an amazing step forward in the research programme and our quest for answers.”
The SCAD patients are integral to the research project as we, a unified patient and researcher team, begin the most challenging aspect of the research: getting people to take part. Usually we find people with an illness to take part in research through their doctor but SCAD is so rare that every doctor signed up to the project would probably only be able to invite one or two people to take part. For this project we are asking patients to come to us through a website where they can express their interest in taking part. The people who will be raising awareness about this website, the research and the opportunity to take part will be the patients from the Facebook group themselves, as they are the best connected to existing SCAD patients and most likely to hear about any new SCAD patients. Doctors will also be made aware of the research and the website through their professional body, the British Cardiovascular Intervention Society, and can also advise SCAD patients how they can take part.
Contact: Rebecca Pritchard, Patient and Public Involvement (PPI) and Governance Officer, National Institute for Health Research (NIHR) Cardiovascular Biomedical Research Unit
Tel: 0116 258 3473