The know-do gap
Most people naturally expect that the health practice, systems and policy decisions made each day around the world are informed by information about what we know works. They imagine that there is a smooth and quick translation of the results of health research into improved health care and improved health outcomes.
Sadly, we know that isn’t true. Rather than a seamless pipeline between improved knowledge and improved practice, there is a vast chasm into which the results of research seem to disappear: the “know-do gap”. Each year, this gap between research and practice, between what is known to be effective and what is actually done, leads to millions of avoidable deaths and preventable illnesses, and billions of wasted dollars. It is found in every country, including Australia, and in every clinical and policy context.
The know-do gap is a huge problem, but it also presents a huge opportunity. If we can bridge the gap and bring the worlds of research and practice closer together we can improve health care, health system sustainability and health outcomes.
The data deluge
So, while there are still many important, unanswered health questions where more research is needed; increasingly it’s not a lack of information we are struggling with, but an overwhelming wave of information: a data deluge.
The gap between what we know and what we do was first articulated by Lee Jong-wook, then World Health Organization (WHO) Director General, more than 15 years ago.
In the years since, there has been a massive surge in research production; with hundreds of research trials now published every day. Perhaps even more importantly, we have now entered the age of ‘big data’. Huge, complex, rich data sources like electronic medical records, clinical trials networks and quality registries (not to mention the many thousands of health and wellbeing apps available on our phones) now provide an endless stream of new information with the potential to improve health decisions.
So, while there are still many important, unanswered health questions where more research is needed; increasingly it’s not a lack of information we are struggling with, but an overwhelming wave of information: a data deluge.
Making sense of this deluge requires a new approach. For example, ‘machine learning’ computer programs can be used to efficiently identify relevant, reliable information in the wave of health data and ‘meta-data’ (data about data) can help bring diverse data sources together so they speak the same language and can be easily combined and reused.
However, new computer programs are not enough. Innovative ways of bringing together people is also a necessary part of any solution to the data deluge.
Consumers as co-creators and users of health data
The ecosystem of health data and research is evolving and so too the role of consumers. As highlighted by recent controversy over the use of social network data, consumers have a crucial role in shaping how our data – including data in electronic medical records, clinical databases and, yes, even the health apps on our phones – are collected, stored, shared and analysed to inform health decisions.
Consumers will also continue to have a vital role in how research is prioritised and conducted, as highlighted by the CHF/NHMRC Statement on Consumer and Community Involvement in Health and Medical Research. There is significant work required to fully realise the opportunity of these important partnerships, requiring ongoing advocacy and implementation of effective levers and incentives.
There are also new opportunities for consumers in the growth of ‘citizen science’ – public participation in scientific research. For example, Cochrane Crowd (crowd.cochrane.org) and TaskExchange (taskexchange.cochrane.org) harness the skills, experience and time of a connected global community of people who care about health, and who want to contribute to improving health practice, systems and outcomes.
New models of collaboration and new technology are also enabling a new ‘living evidence ecosystem’ in which new research is continually being found and integrated into high quality, up to date summaries of research known as ‘living systematic reviews’.
Together, these new ways in which computers and people help make sense of health research make it more feasible for health decisions to be informed by the latest research in a reliable and trustworthy way.
Living evidence
New models of collaboration and new technology are also enabling a new ‘living evidence ecosystem’ in which new research is continually being found and integrated into high quality, up to date summaries of research known as ‘living systematic reviews’. These bottom line summaries achieve what has been unachievable to date – a trustworthy summary of what research has found in a specific topic, kept constantly up-to-date with the latest research in that field. Living systematic reviews can also support ‘living’ guideline recommendations so that we can all have access to best practice strategies that are also up to date with the latest research (up to now most guidelines have only been updated every five years or so).
While conventional systematic review and guideline processes have involved consumers at particular points (e.g. prioritisation of research questions and review of draft documents), the continual, persistent nature of these new living processes opens up opportunities for different forms of partnership. In particular, we are interested in how large communities of consumers, clinicians and others can work together to make sense of the research data deluge, co-creating high quality evidence so we can all find and use the best evidence for the millions of health decisions that are made every day. We would love to hear your thoughts on this, so please get in contact!
