Health Data in the Real World
Guest blog by Kellie Peters and Regina Lally, Databasix
In October we were invited to deliver a workshop to Digital Health Oxford members on ‘Data in the Real World’. Our aim for the workshop was to provide delegates with an approach to understanding the healthcare data landscape in the UK that would assist them with their current/potential data projects/apps/research. Oh, and we offered to make it fun too!
As there was the potential risk (you can tell that we were ex-project managers) of individuals falling asleep, we decided that this session was not going to be a death by PowerPoint, but one that was interactive. We put forward a number of questions for delegates to consider, engaging in conversation and giving them the opportunity to identify and note down some key actions to take forward. Thankfully Richie also provided caffeinated drinks and chocolate!
In our experience working on high-profile NHS data management projects, we found that understanding your data landscape (people, data and process) at the beginning of the project means you are more likely to put the mechanisms in place that will result in data which supports informed decision-making by the end of the project’s life cycle. Below we describe the types of questions we encouraged the group to consider and feedback.
In our opinion, many health data projects fail to be fully adopted because key stakeholders were simply excluded from the consultation period. For example when we were involved in developing the Systemic Anti-Cancer Therapy (SACT) dataset for England, it was essential that Nurses, Oncologists, Pharmacists, IT, local hospital Data Managers were all involved in the development of the online data collection system, as they would each play a role in collecting and submitting data.
We asked the group to think about your stakeholders and consider what will be the perceived burden; when do you plan to engage them; who will benefit now and in the longer term. We have found that if you can identify those skeptical stakeholders early on and work with them to overcome their concerns/issues, they will become an advocate for your project/app. Discount them at your peril!
We are incredibly passionate about the power of high-quality, robust healthcare data yet we know that many data projects:
- have encountered significant roadblocks in gaining access to data because of ‘information governance’ concerns;
- are overwhelmed by the sheer amount of duplication of data that exists within the NHS;
- are concerned by the amount of gaps in the quality of data that exists, and the lack of correctly coded clinical data.
It was interesting to see that these examples resonated with the group and lead to lively discussions about what is your biggest data frustration. We challenged the group to consider what data (if any) already existed and how easily accessible it was and how could they link it to best effect?
Understanding how data is collected is critical; you cannot assume that everything is in an electronic format. There was a very entertaining conversation about transferring patient data via fax machines: yes, they still exist and are in use!
We have been involved in many discussions over the years where the common thread was that data went into a ‘black hole’ which ultimately lead to the data providers disengaging from the process.
We asked the group to think how they would build feedback into their data project, how would the data be quality assured and in what format would the data be collected.
We wrapped up the session with plea/war cry that if you have engaged the right people, collecting relevant high quality data, which is supported by a sustainable feedback process, it will lead to robust data that ultimately will lead to people making informed decisions that is a benefit to the organisation.
Kellie and Regina are the co-founders of Databasix and are incredibly passionate about bringing people and data together.
Their services include Data Protection, Data Landscape Reviews, Data Consolidation & Systems Review, Training Workshops and Consultancy Services.