During the CLAHRC event “Making it Real – Patients and public improving healthcare research”,Leicester, one of the sessions I attended was delivered by a patient who had extensive involvement within various clinical trials over the past few years. He was a great example of how health research, once recognised as an invaluable part of the improvement of treatment pathways for illnesses, can attract a greater number of patient participants. For him the trials were not separate from his current clinical treatment, but instead were directly related to revealing ways of making that treatment better. Barriers he observed to research participation included poor advertising and the scientific terminology used to describe the research aims, objectives and patient requirements . These were two of many observations flagged up as impeding access to trial information for patients. Present in the audience were health researchers and healthcare professionals involved in research and so one would hope that hearing the comments on potential improvements from a participant’s point of view may influence their methods of recruitment in future.
Patient involvement in research is ever-increasing, further embedding itself into standard research practice here in the UK which is great to see. The UK Clinical Trials Gateway and the national advisory group INVOLVE are among those that provide resources and information that help to keep patient & public involvement high on the health research agenda. By involving the patients and the public, clinical research will hopefully continue to democratise, increasing the amount of accountability of the researchers by allowing transparency throughout the research process. Overall this will pave the way to better research practice on the one hand, and increase public awareness and confidence in research on the other. I think that striving to do so may be a good way of increasing patient involvement within clinical trials.
On the 5th March I attended the Society for Academics in Primary Care (SAPC) regional conference to present my work on “non-clinical patient needs: mapping diversity in primary care” a parallel session. Dr Alf Collins, Consultant in Pain Medicine at Taunton and Somerset NHS Foundation Trust, and Professor Nigel Mathers were the keynote speakers in attendance. Their talks focused on patient-centred care and, in particular, its influence in the management of long term clinical conditions. Dr Collins talked about the three principles deemed necessary for the personalisation of care: coordination of care, the engagement of patients in decision-making and thirdly, the supported self-management of care for individuals. He described how a fine balance of all three is something that the UK health system is already working towards but that it requires cultural changes within the system for it to work effectively. Following on from this, Prof. Mathers elaborated on the components needed for true patient ‘activation’; the combination of knowledge, skills and confidence which will allow patients to actively and safely manage their health.
Poster viewing sessions were scheduled throughout the day and I found one particular study’s poster quite relevant to the work that I have been doing over the past six months. It was on the feasibility and acceptability of Clinical Commissioning in general practice, drawing on evidence from interviews with GP’s, some of whom were saying that it was not their place to do so and that they had entered into the profession to help to care for people, not to ‘population-manage’ or budget for services. This was of particular interest to me as it provided a possible explanation as to why some of the practitioners I had interviewed responded apathetically to mapping out their population’s needs even though after recognising the benefits of such mapping for their patient population (i.e. informing commissioning decisions with cost implications)
Being the first presentation that I have delivered in front of an audience of health care professionals with academic interests, the planning was slightly more challenging than usual! But having the chance to run-through the presentation beforehand and to receive feedback from the SAPPHIRE group helped me to make the final adjustments. On the day it was well-received and I think it has given me the confidence to do something similar on an even bigger stage!
On Friday 28th September, I attended a presentation on the Scottish Sepsis VTE Collaborative – a national quality improvement programme led by Healthcare Improvement Scotland. The presentation was delivered by Kevin Rooney, a professor and clinician from Scotland.
Sepsis and VTE have been seen as illnesses associated with the elderly, but this presentation highlighted that this simply wasn’t always the case. Many people have been misdiagnosed with other conditions due to a combination of the lack of awareness of the widespread nature of the illness, and the absence of a systematic, diagnostic Sepsis checklist on a more clinical level. Kevin Rooney has worked to develop a checklist and has implimented it to a great level of success judging by his initial results.
The presentation was very informative as I was previously unaware of very high mortality rates from the contraction of Sepsis. It was brilliant to see how Kevin Rooney has proactively led the implimentation of changes in procedures to reduce the lives lost within the hospital he is working at. There plans to continue spreading information, raising awareness, and positively impacting other hospitals, first in Scotland and hopefully across the UK too. I thought it was great example of how an individual’s passion for better healthcare can save lives.