Breaking down the research barriers

Most of us would agree that clinical research is a good thing – we need it so that healthcare providers can keep improving the treatments we offer to patients. In most conditions this involves doing large scale trials to generate evidence. Nationally, more patients are getting involved year on year: last year over 595,000 patients took part in clinical research studies in England.

Taking part in a study is entirely voluntary, but the first step is for patients to know about what research is going on. Yet patients are often unaware of studies relating to their condition are taking place in their local hospital unless they are actually approached by a doctor or nurse to take part. A recent survey found that more than one third of people do not feel well informed about clinical research, while less than 20% of people felt confident about asking their doctor or medical specialist about taking part in a research study.

A campaign by the National Institute for Health Research is trying to encourage patients across England that “it’s OK to ask”, doctors or nurses about clinical research, to find out whether it’s right for them ( It’s launching today (Monday 20 May) on International Clinical Trials Day.

Depending on how effective this campaign is, you may be inundated with patients (or their carers) wanting to know about which trials they can join.

As always, it’s a bit more difficult in haemophilia and bleeding disorders where most of the studies underway are of new treatments.

Kate Khair, nurse consultant at Great Ormond Street Hospital is a keen researcher. She says: “The problem we have is that Clinical Trials of Investigational Medicinal Products (CTIMPs) generally only take place in sites with a good research history, whereas the patients are all over the shop. Some haemophilia centres have only limited expertise in research, and some have only a handful of patients. We need to build collaborations within our networks – this may mean patients moving from one centre to another for the duration of the trial.”

Kate has long been an advocate for nurse-led research, and not just around new factor concentrates. With more haemophilia nurse researchers on Haemnet, she plans to start a new blog to keep everyone informed of new studies, including SO-FIT.

What is SO-FIT? Keep checking in on Haemnet and you’ll find out over the coming weeks.


Mike Holland founded Haemnet and SixVibe. He is a medical writer, editor and event organiser – find him at Google+ or Driftwood.