New pa­tient ed­u­ca­tion course lifts lid on clin­i­cal drugs tri­als

The Irish Times - Tuesday - Health - - Health Lifestyle - Sylvia thomp­son

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.

‘Lo­cal sup­port’

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,” she ex­plains.

“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.”

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.

‘Pa­tients re­port­ing back’

“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 said.

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.

Newspapers in English

Newspapers from Ireland

© PressReader. All rights reserved.