“We keep hearing that IG is the problem, but we need to understand what people mean by this.”
The NHS is one the most complex social infrastructures that I have ever come across, and it seems no wonder that people encounter real difficulties when trying to innovate and improve services for local communities. The situation is further complicated when multiple organisations try to share information within the NHS, and more so when the aspiration is to share with other interconnected agencies like social care, fire or police for example. But what is the root cause of the problem?
During a phone conversation in early February, Dawn Monoghan, Head of Data Sharing and Privacy at NHS England said: “We keep hearing that information governance (IG) is the problem but we need to understand what people mean by this.” This conversation and many before that, led Dawn and her team to join forces with NHS Digital to help understand the challenges facing NHS Vanguards.
Vanguards are local NHS and care consortiums leading on the development of new and better ways of providing care as part of the NHS Five Year Forward View. With access to national support and a stake of the £200m transformation fund, the aim is to enable them to build on best practice and to make effective and speedy changes that can be rolled out across the country.
As part of this package of support, the Centre of Excellence for Information Sharing (the Centre) was invited to support a series of workshops aimed at strategic and IG leads to help uncover the challenges facing local Vanguards. Over a period of four weeks we met over 25 local Vanguards and although their ambitions varied, the challenges they are experiencing are unsurprisingly familiar, and as suspected not all entirely about IG. During one of the first exercises, we asked people to list all their challenges and place them into one of three categories – information governance, technology or culture. Below is a flavour of the main things that came out of the four workshops:
|Information Governance (policy/ process/ legal)||Technology
|· Confusion about Section 251
· Understanding and navigating the Data Access Request Service (DARS)
· Pseudonymisation (how to apply policy/ law)
· The role of the data processor vs. data controller
|· Identifying cohorts e.g. those in care homes
· Using a common identifier to link data between providers
· Risk stratification of linked groups
· Managing objections
· Improved data quality
· The need for real-time data
|· No common language
· A lack of understanding about the benefits
· A fear of sharing, getting it wrong and the consequences
· Data protectionism
· Risk for data controllers
· Different interpretations of the rules/changing perceptions about the purpose
Although there are clearly many IG challenges present, it demonstrated that the term ‘information governance’ can sometimes mask the real issue. Unfortunately, this doesn’t alleviate but only adds to the problem. However, I was reassured to see that many of the challenges placed in the IG category could be resolved by clarifying misunderstandings around information governance policy and law.
As an organisation, our interest lies in the third column – culture, and it was encouraging to see these challenges also acknowledged and placed on an equal footing to that of IG and technology.
Cultural challenges centre around peoples’ attitudes to information sharing and are often derived through systemic (and sometimes historic) cultural norms. They do not require a policy or system change to overcome them, or even a costly IT infrastructure. Instead it requires a mutual space for agreeing a common goal (or purpose) for sharing information. This is a space where people work together to build trust, nurture relationships and develop an appreciation of the various roles and disciplines that can all contribute towards that goal. It is a space for creating a common language, transparency, a mutual understanding and even a collective agreement to share any elements of risk.
Unfortunately, there is no quick fix to any these challenges. However effective leadership can play a vital role in giving people the support and accountability needed to make real change. Through perseverance and dedication, organisations can collectively reap the benefits whilst also overcoming any ethical concerns or hidden fears that may exist from a lack of confidence in systems or processes.
The workshops demonstrated the importance of people working together for the greater good to create a new culture of openness and mutual respect as opposed to the target driven competitive culture that has become the norm in recent years.
And although there no one-size-fits-all solutions for the IG and technology challenges presented, most of these were, in fact, de-mystified when the facts of what can and cannot be done were laid out, along with a practical explanation about how to navigate the process. To conclude this series of workshops, a final event will be held for IG leads on Wednesday 26th April to look at the challenges presented at the earlier sessions in more detail, with the aim of providing clarification and a focus on locally-led solutions.
Over the coming months, the Centre will continue to work with our national partners and local Vanguards. If you are interested in working with us, please get in touch by emailing firstname.lastname@example.org.