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Patient Involvement: New Website Unites Patients and Researchers

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By Zoe Petit-Zeman, Director of Patient Involvement – Oxford Biomedical Research Centre.

Chatting the other day with a colleague, we were wondering whether it would be unacceptably cheesy to launch our new website on Valentine’s Day. It was quite tempting: patientsactiveinresearch.org.uk aims to “matchmake” patients, carers and members of the public who are interested in medical research, with researchers working in the Thames Valley.

The website already includes a selection of postings from researchers seeking patients (and we are working hard to collect more) and patients are now invited to take a look and either register general interest in involvement or directly contact researchers with whom they want to work.

When we were devising the website (with big thanks to PAIR – our patient strategy group, who have helped so much to ensure it is right from their perspective) we had a very purist aim: to include only “true” patient and public involvement (PPI) opportunities, encouraging researchers to advertise on the site if they sought patients as partners in design or delivery of research, not as participants. Part of the reason for this was my ongoing bugbear that so folk don’t seem to understand what PPI is and it is so often mistaken for other pursuits such as recruitment to studies.

But the more we thought about it, the more important it seemed to compromise: we will go on promoting the site as a place where researchers post PPI, but if they want to add participation opportunities, that’s fine too. A patient in a waiting room may lack the time or the will to wonder in much detail what a poster asking for their help is all about. If they then visit the site, we’re keen to give them as many chances as possible of finding things there that interest them.

Some of the opportunities on the site are open to those with specific conditions, such as cancer, heart disease or mental health problems, while others are open to all.

We’re doing a major leaflet drop via GP surgeries, hospitals and other places across the region and posters will be going up in clinics and elsewhere where patients spend time. A parallel publicity drive to researchers will keep them adding more opportunities over the weeks and months ahead, and of course beyond. We want this site to take root and grow.

Importantly, it has a place where you can have your say and it’s been really encouraging to see the enthusiasm with which both patients and researchers have greeted this new resource.

With any luck, by February 14th , the site will already have successfully matched researchers with patients, carers and others, helping to make medical research in our region is as good as it can be, and truly aimed at patient benefit.

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