DIVERSITY, EQUITY & INCLUSION


Moving beyond patient centricity; a new era of mutual investment


AMELIA HURSEY, RESEARCH MANAGER, PARKINSON’S EUROPE


Credit: NTshutterth via Shutterstock. P


utting ‘the patient at the centre of research’ is the current position being taken by industry and health care research experts. However, if


you have a conversation with many in the field, exactly what this means in a practical sense is often unclear and inconsistent. Much of the terminology used in the activity of ‘putting the patient at the centre’ is littered with confusion. What does each stakeholder mean by patient engagement or involvement? When is it only consultation? When does it become meaningful collaboration or co-production? How do we even evaluate that it made a difference? Unless you haven’t noticed, all of these


terms would not be of consequence or even used by the patients themselves. It’s like a lexicon game of piggy in the middle where the


48 | Outsourcing in Clinical Trials Handbook


bigger kids (industry and researchers) are throwing the beanbag to each other over the head of the younger more naive child (patients and patient organisations) and saying to the parents that they are making the game about their younger sibling. I think we all remember these moments and I’m pretty sure that the game ended when the younger sibling got fed up with not being able to catch the beanbag. So why have we continued to pursue this


vexatious model in the world of research and think that we are doing the right thing. The comms and optics look great but the reality of the activity lack satisfaction and cultural change for all parties involved. So I would like to suggest we move into a new era of mutual investment, putting the outcomes of high quality research at the centre and dissolving the ‘us and them’ attitude.


Page 1  |  Page 2  |  Page 3  |  Page 4  |  Page 5  |  Page 6  |  Page 7  |  Page 8  |  Page 9  |  Page 10  |  Page 11  |  Page 12  |  Page 13  |  Page 14  |  Page 15  |  Page 16  |  Page 17  |  Page 18  |  Page 19  |  Page 20  |  Page 21  |  Page 22  |  Page 23  |  Page 24  |  Page 25  |  Page 26  |  Page 27  |  Page 28  |  Page 29  |  Page 30  |  Page 31  |  Page 32  |  Page 33  |  Page 34  |  Page 35  |  Page 36  |  Page 37  |  Page 38  |  Page 39  |  Page 40  |  Page 41  |  Page 42  |  Page 43  |  Page 44  |  Page 45  |  Page 46  |  Page 47  |  Page 48  |  Page 49  |  Page 50  |  Page 51  |  Page 52  |  Page 53  |  Page 54  |  Page 55  |  Page 56  |  Page 57  |  Page 58  |  Page 59  |  Page 60  |  Page 61  |  Page 62  |  Page 63  |  Page 64  |  Page 65  |  Page 66  |  Page 67  |  Page 68