Novartis trials Patients Know Best

E-Health Insider is covering our clinical trial with our newest customer, Novartis. This should be the first of many clinical trials that PKB makes possible. In this case, the aim of the study is to better understand what life is like for a patient with COPD, a long-term lung condition.

There are two advantages to using PKB for research. First, our privacy controls make it technically and ethically easy to collect data from patients for research, without giving away the identity of the patients. The protection means that patients are happy taking part in research trials. This in turn makes it faster to get ethics approval.

Second, we can capture more data more accurately than in the normal methods of traditional research trials. This is because patients use PKB to get care from their clinicians. So the data analyzed are actual care data, rather than a parallel, research-only data set. The data used are thus more comprehensive and more accurate than with other methods.

If you are an academic researcher, or work at a pharmaceutical company, contact the PKB team so we can help with your research efforts.

Novartis trials Patients Know Best

15 September 2011   Jon Hoeksma

Pharmaceutical firm Novartis is to begin a post-market trial using the online patient-controlled personal health records service supplied by Patients Know Best.

Post-market trials are conducted for drugs that have passed initial toxicity and effectiveness tests and received some regulatory approval. They are intended to gather additional information about safety and efficicy and optimal use.

The trial is a significant development for Patients Know Best, which is already in use at several NHS trusts, including Great Ormond Street, University College London and South Devon.

The Novartis-sponsored trial will cover patients living with chronic obstructive pulmonary disease in five practices linked to a London hospital.

Patients will use the Patients Know Best personal health record to record details of their condition, their treatment and how they feel, which will be analysed for context and meaning.

Dr Mohammad Al-Ubaydli, chief executive and founder of Patients Know Best, told eHealth Insider that data recorded by patients will be analysed using newly incorporated congnitive analysis software. “This will enable us to extract the story the patient is telling us.”

He said that, typically, patients participating in post market trials have little incentive to maintain what they see as a stand-alone trial record, which they tend to see as abstracted from their care.

But he argued that the multi-participant set-up of the Patients Know Best record made it particularly well suited for patients with complex and long-term conditions requiring treatment by extended teams of professionals.

“It is viewed and maintained by the patient’s clinicians as well as the individual. This means they have greater confidence in it and are more likely to use it and keep it up to date.”

He said the methodology of the trial was not specific to Novartis treatments but could be applied to tracking the experience of patients receiving a range of drugs already out in the market.

“We’re trying to find out what it is like receiving these drugs and what it is like managing their COPD.” The trial is due to run until April 2012.

Patients Know Best is currently shortlisted for the Department of Health’s Apps and Mapscompetition.

Dr Mohammad Al-Ubaydli will be speaking at the EHI Live 2011 conference and exhibition at the NEC in Birmingham on 7-8 November. Registration is open now.

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