This year a team from Ashfield Healthcare Communications attended the annual ISMPP event in London. The conference theme, "Advancing Medical Publications in a Complex Evidence Ecosystem”, certainly saw the latest and greatest showcasing and discussion from pharma, agency and publications’ representatives.
This year there was an even greater focus on patient centricity and the involvement of patients and communication of data pertinent to them. Here’s a quick blast through the research presented and also the key note session:
Speed research topics were mainly patient-focused, including two very interesting presentations; the first was a survey by Georgieva et al on how patients are involved in communications plans. They demonstrated that although many patients were interested in peer-review publications on their treatment and disease, there is still an unmet need for clarity and relevant information.
The second interestingly showed results from a review by Wadsworth et al of 52 BMJ articles since the patient involvement statement was required. They showed that patients were thanked for their participation in just under a third of articles (30), no patient involvement was reported in 13 articles, and only one article included a patient as an author!
In his Keynote address: Patients Know Best, Mohammad Al-Ubaydli discussed how we must aim to put patients in control of their medical records, as they are the only ones attending every appointment and with a committed interest in what is happening.
The need for patient involvement in research and communications at all stages, including trial design (with special insights into patient retention) through to publication and then policy documents and prescribing changes, as these are all areas in which patients could, should, and when given access do have a major contribution to make. Although stating the obvious that any of us could become a patient with a life-altering condition at any time, he quite rightly stressed that a contribution made from experience could make someone else’s life better.
In addition, the growing importance of real world evidence (RWE) in regards to the collection of patient data and privacy was considered with real world clinical evidence of benefit/risk of treatment gathered from real world data (RWD). Patient privacy was highlighted as still important, but so was publishing the data, which may not fit a conventional plan, but it’s of no use if it is not published?
To close the event off, the impact of Brexit from a patient trials perspective was vocalised, but with 1500 trials having a UK sponsor there still seems to be uncertainty of what will happen to that data in the next 14 months and how it will be treated… Meanwhile, the community is watching and waiting .
To summarise, there was a real strong focus on patients this year which just highlighted how key their involvement is through every aspect of the product lifecycle and publications process. To view how Ashfield can support better engagement with patients across the lifecycle as well as publications go to: