Public and Patient Involvement in Research – Experts in Their Own Care

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Healthcare research must meet the needs of its users, so it is important for researchers to engage with current or potential patients to truly understand their situation. That way, impactful research can be conducted which shapes healthcare practices for the benefit of future patients.

My study (to be discussed in more detail at a later date) will involve exercising patients at the Royal United Hospital Bath and measuring the effect on the disease activity on asymptomatic pre-malignancies (early cancer). While this is pilot research, it could form the basis for future studies and eventually become part of NHS practice, so getting patient input is key.

Designing my study uncovered a number of complex methodological questions, such as: Which samples are best to collect for protein electrophoresis measures – urine, blood, saliva, all of the above!? What intensity of exercise will provide an adequate stimulus without posing a risk to patients? Do I need to derive plasma or serum from the blood sample, and how will I collect and centrifuge samples to achieve this? But it also other raised equally important questions, such as: What time of day will patients be free to come for exercise classes? Will they travel by bus or car? How can I reimburse them in a way that will motivate them to take part? Will these patients scared of treadmills? How should I word “twelve weeks of vigorous intensity treadmill exercise” so not to scare people off!

I’ve decided to tackle the latter with a focus group. A few weeks ago, I sent invitations out to patients – via a very helpful Clinical Nurse Specialist at the Royal United Hospital – and had a group of volunteers who were willing to share their thoughts on physical activity in research. The evening involved discussions around a presentation on the study design and review of participant-facing study documents. The patients provided new insights into the study measurements, practicalities around timings, parking, transport and exercise, and their motivations for taking part.

Study measurements – “men with man boobs” and technology: not my first thoughts when trying to decide between a chest-strap or arm-band physical activity monitor! But very useful information. Also, access to technology in this older adult population was very varied – with one using MyFitnessPal and others less sure – food for thought on diet diaries!

Practicalities – don’t mention the ‘P word’ (parking): lots of opinions on the parking situation at the Royal United Hospital, but a clear message not to run exercise classes during ward visiting hours. The patients seemed very receptive to exercise and would “try anything once”.

Motivators vs. sweeteners: getting a health check report and having the opportunity to improve your health were the main motivators for these patients, with the financial reimbursement “the cherry on the top”.

Whilst these views may only represent a small sample of this patient population, it certainly gave another angle on the research design which will be appearing in the IRAS form soon!

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