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If we assumed every patient is a research volunteer, what would we do differently?

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People who know me will know I’ve spent a great deal of my career talking about evidence-based practice and developing cultures in which turning knowledge into action is easy.

They will also know I have constantly supported the development of better evidence in more areas of care.

susan hamer

susan hamer

Susan Hamer

The world of clinical research has changed dramatically in recent years. Most countries across the globe now participate in clinical trials. In the UK over 600,000 participants take part in research annually and every trust is active in clinical research.

This surge in demand for science has also had a similar impact on the nurse workforce which contributes to it; and the changes have been significant. Clinical research nurses are growing in number and developing their expertise.

So what happens if your field of practice involves working with healthy people or those with health conditions who have volunteered to step outside mainstream standard care? By definition you are working in clinical equipoise - there is genuine uncertainty in the expert medical community over whether a treatment will be beneficial. This is a world without agreed evidence.

Much of professional practice is based on the assumption of certainties. You follow a clinical pathway, you follow a particular guideline. But how do you care for individuals who are volunteering their data, tissue samples, and personal time in areas of clinical uncertainty?

Primarily the response constitutes nursing at its best. Participants in research rightly deserve nursing care led by nurses who understand that the care of the research patient is about ensuring “exceptional, ethical, safe care, yielding high quality data” (ANA & IACRN, 2016). The primary focus of clinical research nursing practice is maintaining the safety of the participant along with ensuring the integrity of the research protocol. The recent development of a scope and standards for clinical research nursing practice in the US is a useful stepping stone to evolving international practice.

If we assumed that every patient is a research volunteer, what would we do differently? If we accept that there is much we don’t know in current practice and treated practice areas much more as live research arenas, would that improve practice and care for all patients?

Based on my reflections of the standards (ANA & IACRN, 2016) I think I would improve my own practice in three key areas:

  • Commiting to high quality data at every clinical interaction: every piece of data collected could be used to create the evidence that could change clinical outcomes in the future;
  • Gaining informed consent: consent is never static, it should never be assumed and it should always be the subject of high quality frequent interactions with patients;
  • Articulating the value of research as part of the quality and safety culture of an organisation.

Those are my three, what would yours be? Please do let me know on Twitter @dollyblue3 and use #crnurse

Susan Hamer, Director of Nursing, Learning and Organisational Development for the NIHR Clinical Research Network (NIHR CRN)

Reference

American Nurses Association and International Association for Clinical research Nursing (2016) Clinical Research Scope and Standards of Practice Sliver Spring MD: ANA IACRN

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Readers' comments (1)

  • Dear Susan
    I am a "patient representative" working with the NWC CRN who have supported me and approved recently a project that I have put forward called "Building a Research Community". In a nutshell, I am an ill health retired, senior manager in the NHS (and continue to be a strong supporter of the NHS) wanting to bring together people in a similar situation to me (those with a long term condition) with the intention of building a community that will inform research but potentially undertake its own, unique research project on a subject that is agreed by those that have a long term condition and are a member of the NWC Research Community. I would really welcome talking my project through with you in more detail. I have some summary documents that explain the project but for now I will make you aware of a radio Merseyside interview that I did on 1st June http://www.bbc.co.uk/programmes/p0533780

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