In our cover feature this month (p20), John Pinching considers the need for pharma to secure meaningful and sustainable engagement with rare disease patients, and how the challenge of doing so is changing. The digital era, coupled with the evolving patient, has opened new channels of contact and communication, creating ideal conditions for the rise of rare disease communities and their closer interaction with pharma. Also on the rare disease theme, there’s a look at the promise of gene therapy on page 26.
Elsewhere (p23), Jennifer Bradford and Matthew Metherell consider the success and potential of artificial intelligence in clinical research. Real-world data harvested from electronic health records and other data sources, coupled with progress in machine learning, will play a key role in creating the next generation of clinical trials, they note. Aiden Flynn (p31) also explores how the collection and analysis of real-world patient data can be an ‘invaluable asset’ in clinical development, while Janssen believes real-world evidence could realise an ‘efficient, personalised and truly patient-centric healthcare system’ (p28).
On page 34, AMPLEXOR’s Monika Vytiskova highlights the need for the transformation of translation management within the life sciences sector, and considers the potential of neural machine translation technology – already on the radars of most pharma companies – to vastly improve and accelerate the processing of data mined from myriad sources.
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As life sciences companies’ international ambitions grow, and global regulatory scrutiny in parallel, managing translated content is becoming ever more complex. So the promise of neural machine learning as a potential solution is appealing. But just how far can the technology go in reducing workloads and improving accuracy and turnaround times?
To understand the full scope of a condition, pharma needs to appreciate the full tapestry of the patient experience. The challenge for industry in the realm of rare diseases, however, is to meaningfully engage with patients and convince them that they are an essential part of the research equation