New patient education course shines light on clinical drugs trials

‘It’s also important for researchers to hear what patients want from new drugs’

Do you ever wonder how long it takes to develop a new medicine? Are you interested in understanding what exactly the Health Products Regulatory Authority (HPRA) does? Do you sometimes question why some medicines are available in other countries and not in Ireland?

If you’ve answered yes to the above three questions, then you might be interested in applying to do a new patient education programme run by the Irish Platform for Patients’ Organisations, Science and Industry (IPPOSI).

Derick Mitchell, chief executive officer of IPPOSI, says the organisation is running this course to give patients and patient advocates reliable information about clinical trials, health technology assessments [which check whether the State can afford to introduce a new drug or medical device] and regulatory authorities. "Most people who become patients have access to a lot of information on the internet. Not all of it is trustworthy and verified by health professionals," says Mitchell.

This new course – run mainly online with some face-to-face learning – aims to have better informed patients/patient advocates. "The aim is to have educated patients who can get involved in research or go on committees. We want patients to look at results of research and see if the right questions were asked. Researchers don't reach out to patients the way they should," says Mitchell. The course content has been devised by and is delivered by scientists from Trinity College Dublin, University College Dublin, the Health Information Quality Authority (Hiqa), the National Centre for Pharmacoeconomics (NCPE) and the HPRA. It is funded by the Health Research Board and other state agencies.

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Wendy Costello, a parent from the Irish Children's Arthritis Network did the pilot version of this new course between October 2017 and March 2018. "I wanted to step up from local support to be able to inform parents more. I didn't know how drugs were brought to the shelf. I didn't know how to report side effects of medicines. I also felt that by meeting other patient advocates (on the course), I would have a stronger voice," she explains.

Discerning

Costello says that she found the course difficult but worthwhile. “I enjoyed the clinical trials module the most. I met a bio-molecular scientist from UCD which made me realise the importance of patients giving their blood or tissue samples for research. Sometimes, people are nervous about giving samples or they think it’s intrusive but one extra sample taken for research purposes will help us all understand the diseases better,” says Costello.

After completing of the course, Costello believes that she will be a more discerning patient advocate. “I’m more inclined to ask questions of researchers now. I want to know what exactly they are trying to achieve with their work,” she says.

Jane Whelan is both an advocate and a patient. "I've been living with migraine for over 30 years. Not that many people with chronic pain are well enough to advocate," says Whelan. She says that she learned a lot about the complexity of clinical trials and why some patients are left out of trials if they have another condition. "I also learned about the importance of patients reporting back on medicines they use and why a drug might be taken off the market and why some don't come on the market in Ireland due to cost," she explains.

Whelan says that having done the IPPOSI patient education programme, she now feels capable of reading clinical trials research papers and translating this information into lay language for patients to read. “It’s also important for researchers to hear what patients want from new drugs – researchers talk about reducing pain by 50 per cent but patients talk about wanting to be able to drive their children to school or work fulltime. It’s important for the patient’s voice to be heard at the design stage of the clinical trial.”

The Irish Platform for Patients' Organisations, Science and Industry is accepting applications for its new patient education programme until November 16th. The course – which is delivered mainly online – has modules on clinical trials, regulatory affairs and health technology assessments. IPPOSI hopes to expand the programme in the future to include modules on integrated care, medical devises and research ethics.