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Social Media And ‘Real World Data’ – A Natural Partnership

Emma has set me the task of blogging about “what real-world research does”, and crucially how patients can benefit from the pharma industry using real-world research.

So here goes...

Real-world studies are observational; they look at what actually happens to patients in real clinical practice, rather than in a controlled clinical trial.  Patients’ lives are complex and varied and real-world studies accommodate these variations, rather than selecting patients based on strict recruitment criteria.  Clinical trials are still vital for proving whether a drug is efficacious and safe, however real-world studies provide us with an understanding of how drugs are actually used in routine clinical practice and give a strong picture of drug effectiveness, particularly with regards to economic burden and the impact on patients’ quality of life.

What excites me about real-world research is the potential for generating insights and evidence that gets to the heart of the everyday lived experience of patients.  What actually happens from first feeling that something is “not quite right”? Who did they first go and visit to talk about their concerns?  Who first diagnosed the condition? What tests were done? What medication were they first prescribed, and how has this changed over time?  We can also use patient reported outcomes measures to really understand the impact the condition has had on the patient’s quality of life.  Using real-world research we can map out the patient journey from the first symptoms right through to the present day.  Not only that, but we can quantify it at every stage, ensuring the insights and evidence generated are valid and reliable.

Making sure the patient has a voice in real-world research is, to me, vital.  Doctors can take a view on the patient experience and, while this is valuable, asking the patient directly about their quality of life and the impact the condition has had on their daily activities provides researchers and decision makers with a more accurate story. While statistics and data from hospital records are valuable sources of data, only the patient really knows how well they are coping on a day to day level.  Only the patients can assess fully whether they struggled to get dressed this morning.   Only they can put a figure on how much time friends and relatives spent providing care and support for them over the last week.  Again, real-world research can shine a light on the experiences of the patient, and as a result place them at the centre of decision making. Understanding the value of a drug from a patient perspective is a really important component of real-world research studies. 

Looking to the future, for me there are three key areas that relate directly to the patient that are going to be potential game-changers:


1.  Opening up electronic patient records from health-care providers

This is an area fraught with controversy - allowing academics and the life-sciences industry access to the medical records of all patients across the NHS in the UK is not without its critics, not least from an ethics perspective.  However,  there has been a shift in thinking about how to use the data that is collected in routine clinical practice, and the reaction to this development will be pivotal.


2.  Patients gaining access to their own health records and sharing the data online

The development of online open access portals will allow patients to post their own medical records and genome data for research purposes.  This really would put patients at the heart of the research, but again ethical concerns will be at the fore in how this develops over time.  Also, what types of patients will share this information openly? 


3.  The rise and development of everyday technology

The growth in the smartphone and tablet markets in the last 2-3 years opens up many opportunities for real-world research with the scope for the development of a whole swathe of new and innovative methodologies to engage patients and doctors in studies.


We are witnessing the development of real-world studies that bring the patient’s voice to the decision making table with force and clarity.  How patients respond and react to the development of social networking, information sharing and advances in technology over the next 5-10 years remains to be seen but there is no doubt that it will force a significant step change in how research is leveraged by those looking for true patient insight.


Sally Bull

Research and Operations Manager

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