Late last year, Knowledge and Intelligence Coordinator Polly Pascoe headed out to the Institute for Healthcare Improvement’s 27th National Forum to learn from experts in the field of Quality Improvement. This blog is the third and final in a three-part series that considers how the knowledge and insight gained at the forum can better support the NHS on their journey to becoming the world’s largest learning organisation. This blog piece focuses on context, specifically, its importance in adding value to knowledge sharing. As always, we welcome comments and feedback!
Networks and knowledge are intrinsically linked; networks are frequently formed and participated in by those hoping to improve healthcare across the globe, share existing knowledge, generate and spread innovative ideas, and support the continuous learning of healthcare professionals. During my time at IHI, I was lucky enough to attend Learning from Networks to Improve Health Outcomes, where Stacey Lihn told us about the network Sisters by Heart, which was formed by a collective of mothers whose children were diagnosed with Hypoplastic Left Heart Syndrome (HLHS). The network was initially developed to enable the mothers to support each other; however it has now grown to include over 1000 families across the US. Examples of the work carried out by the network include the distribution of care packages to parents of those children newly diagnosed, the provision of both emotional and practical support on a local and national level, and a partnership with the National Paediatric Cardiology Quality Improvement Initiative (NPC-QIC) which now consists of over 40 parents, clinicians and social workers, leading to significant improvements in the provision of care as a result. As a knowledge management professional however, the work carried out by the network and its affiliates regarding knowledge translation interested me the most.
What is knowledge translation?
Knowledge translation describes the process of turning the scientific research of academics into practical knowledge that can be used by clinicians, managers, patients and the public in their journey of managing care, improving services or accessing treatments. Activities in this process can be carried out by an individual; however both their subject knowledge and understanding of both the academic and practical aspects of their work must be robust. Those who attempt to carry out knowledge translation are required to know where to find evidence, how to evaluate its reliability and identify its limitations. While doctors, who share a common language with academics, will have had some training in finding evidence, more often than not patients don’t. They can struggle to find and access the latest findings about the effectiveness and relevance of both new and old treatments.
Can you give me an example?
Recognising these barriers and empathetic to the anxiety a lack of knowledge – and therefore control – can cause many families, the Sisters by Heart network worked in partnership with the health care collaborative to develop research summaries. The summaries have allowed those who access them to understand the latest research findings and their implications. The summaries highlight the limitations of the studies too, supporting families to understand how reliable the findings are, and how they might apply to their own circumstances.
We often consider how we can bridge the gap between patient and provider; however we rarely consider how to bridge the gap between patient and research. We therefore often miss the opportunity to empower patients and their families to become true partners in their own healthcare. By utilising “explained” research, clinicians are able to have open, honest and informed conversations with patients that are not fuelled by ill-informed, inaccurate or incomplete information portrayed by the media.
So what’s the role of networks?
While work is underway in the NHS to support patients to better understand recent research findings through the work of NHS Choices, and research is disseminated in accessible forms for clinicians by NICE, more can be done. These summaries require the time of highly qualified people and this time costs a lot of money, money the NHS doesn’t have. Prioritisation will occur so those clinical and patient communities who face complex or rare conditions are less likely to benefit from these types of reports.
Optimistically, the work carried out by Sisters in Heart and NPC-QIC shows that with a small amount of funding, and the good will and shared purpose of a few patients, academics and clinicians, the rate at which we can translate and share practical knowledge that is applicable to specific groups of people in need can slowly increase. As members of networks, we all have a duty to not only utilise our communities to increase our own knowledge, but those of other healthcare professionals, patients and the public as well.
The movement to empower patients and the public to choose their own care, in their own time, is a positive one. However, simply providing patients access to their own healthcare records, or reviews of their local healthcare providers isn’t sufficient for them to make informed decisions about their health and care. With the volume and availability of health information increasing daily, it is becoming harder and harder for patients to be able to see the wood for the trees. My hope is that every health care network will adopt similar principles as the Sisters in Heart and NPC-QIC partnership and utilise their expertise to translate the knowledge in their domain to broaden the understanding of those who need it.