The European Wound Management Association (EWMA) 2019 Conference in Gothenburg opened with Claes Hultling, an anaesthesiologist, sharing his experience of living with spinal cord injury following an accident 4 weeks before his wedding. He reminded clinicians that our perception of what is important to the person receiving care often differs. In his candid presentation he talked of the issues faced by spinal cord patients. Namely: pain, incontinence, intercourse, fertility and complications of immobility, such as pressure ulceration. He urged clinicians to focus research questions and resources on what patients want, not what clinicians think they want. He gave the example of funds spent on trying to find a cure for cord injury to enable patients to walk again. He argued that this is not necessarily the greatest concern of this patient group. Patients with spinal cord injury need access to advice and support that enables a sense of purpose and helps them maintain active lives that contribute to society. He pointed out that those able to work and self-care are less likely to experience complications. His final thought was that he has learnt to live with, but never completely accepted, his condition; 30 years later he is still angry about what happened but he harnesses his anger and sense of injustice and it drives him to push boundaries and achieve the unachievable.
Our perception of what is achievable changes as our access to information grows and technological advances develop. It has never been more important than it is now to balance information with context and to be able to answer patients' questions, which may arise from their own research. Managing the world of information at our fingertips is challenging and health professionals often report spending time with patients addressing misinformation obtained from internet searches, and signposting written information or internet sites that provide balanced, reliable and credible information. Information should be pertinent, persuasive, personalisable and relevant.
Information is useless if the recipient is unable to process it; we have all been in situations where we reach saturation point and cannot take in any more, let alone process and retain it so that it is actually useful to us.
Clinicians should not feel threatened or frustrated by informed patients; instead, we should see this as an opportunity to challenge our own perceptions and address misinformation. Building a rapport with patients is key to establishing trust, and trust is paramount between patient and caregiver. Interpretation of available information will differ depending on a patient's ability to process the information, their perception and lived experience.
With the increase in available information, there are questions we need to consider: how do we use the information to best effect? How does health literacy of the public and co-workers impact information giving and how do our beliefs and values influence the processing of information? What is our sphere of influence? What do we need people to know to enable care?
Self-management, motivation, concordance and perception are influenced by experience and exposure. Patients are consumers; they look for information, they compare, evaluate and make choices around their health in the same way that they purchase products. We must be clear about their current healthcare issue, understand their expectations, be able to explain the consequences of any choices they make, explain the risks and benefits of options for treatment and provide information about red flags and anticipated outcomes.
Across Europe, at least 4 million people will develop a wound in this year. We must strive to improve awareness, educate and address access/variations in care that result in inconsistent outcomes. We must put an end to the silo budgets that stifle innovation and break down the barriers between acute, secondary, tertiary and social care. As clinicians we have a duty of care to our patients and I believe that by working together, and treating the patients as individuals, we can provide the best possible outcomes.