This conference is held annually for nurses and health care professionals to understand about clinical research as part of their career path, network and share ideas and good practice.
Clinical research nurses are historically an under recognised group within the healthcare setting. However their work is invaluable to advancing medical research and patient understanding to available treatments. The skills of clinical research nurses are so often under-utilised within mainstream clinical practice and the research agenda but offer so much. One the main discussions at the conference therefore is to look at the broader agenda and look at where we can each promote the invaluable work that the clinical teams do.
My invitation to participate in the conference came to me because of my involvement as a patient advocate/representative with Imperial College Hospital.
Throughout the day’s conference there was an overwhelming enthusiasm for spreading the word about clinical research. For better understanding about what clinical research actually is and what is available at the bedside together with what is being developed in the lab.
Certainly I have been aware that there isn’t enough information nor knowledge available to patients nor also a practical matter of fact guidance to what clinical research truly is. As patients we there is a need (in most of us) to know that research is being undertaken to advance medical care. To know that there are changes that may benefit us or those who travel the road behind us. To know that involvement in a trial will not leave us like the Northwick Park ‘Elephant Man’ drug trial. To know that participation in research may mean simply completing a survey of questions every few months or having your bloods analysed regularly. It’s not always about a taking a new drug!
What I discovered from this conference was that it wasn’t only the patients who didn’t fully understand clinical research – it’s also the doctors and nurses in clinical settings. I guess it’s understandable that a GP might not be able to keep up with all the ‘new’ research. Less understandable for doctors and nurses in a hospital environment but still possible.
This is why it’s critical that ‘clinical research’ is something that is taught in medical school as progress. That there is an easily accessible, searchable and functional database of trials available to all. That the trials in the database are up to date and have contact details of who’s in charge and how to participate.
It’s also critical that there are trained clinical research staff available for consultation with patients and colleagues alike. These staff members to have a voice at MDT settings so that all staff are aware of their role and expertise. They should also span the gaps between primary and secondary health care settings. Referrals of patients are sent to them to have research explained fully to them and how they may participate. They should also, with training, be able to dispel any myths about elephant man etc and to encourage the positive impact of clinical research.
In addition the role of a clinical nurse specialist doesn’t have to be a full-time role. There were a number of speakers who told us of how they had embraced their clinical role in addition to research. As a midwife, as a nurse, as a lab clinician… perhaps this is one of the best solutions so that they’re able to bring both practical and research experience to each case.
An excellent conference and certainly there was a great deal discussed for me to consider in my many networks and patient advocate involvement roles. Below are a few bullet points:
- Historically clinical research has been under recognised in healthcare.
- Clinical research skills are under-utilised in main stream clinical practice and research agenda.
- Need to look at a broader agenda.
- Need to promote the invaluable work that the clinical teams do.
- More multi-professional education and training needs
- Research, translation and innovation
- Through research we bring some certainty in an uncertain NHS world
- A larger impact on health is from ‘public health’ rather than ‘medical health’ – need to re-balance
- Gaps between primary and secondary health care. Closer integrated working practices are needed. New ‘Pioneer Program’
- Targets are not the same as outcomes
- Patient Centred culture
- RCP – Circle of Patient Centred Care
- RCP – Future Hospital Commission 2013 diagram
- Competencies and appraisals for research nurses should change and be updated in methodology
- We don’t do enough to raise awareness of clinical trials
- Need more clinical research training provided to clinicians so they’re able to speak with patients
- More accurate information on hospital trust websites and other websites i.e. charities, local authorities etc
- PALS should receive training too
- Everyone should be aware of ‘We do clinical research‘
- National Institute for Health Research Clinical Trials
- Involvement in research benefits patients but also hospital trusts – financially and with reputation
- Managers and senior colleagues should support staff in training and research recruitment practices
- Work with the media and charities to send ‘good messages’ about research not just dramatic headlines
- Other healthcare professionals including pharmacies should be involved and aware of clinical research.
- Always feedback results (good and bad), send thank you’s to those involved and offer further involvement
- What do clinical nurses do?
- Read Kerry Stott’s blogs about clinical trials
- ‘We Nurses‘ website and also twitter @wenurses
“To find your mission in life,” author Frederic Buechner is quoted as saying, “is to discover the intersection between your heart’s deep gladness and the world’s deep hunger.”
“If we are serious about patient choice and patients having a partnership with clinicans, then we have to be serious about raising patient awareness of clinical research opportunities.”