This article was first published on healthandcare.scot

A panel of experts has raised concerns around work to integrate health and social care data, voicing fears that this could sap the life from social care if new systems fail to have at their heart the things that matter most to people’s lives.

Health and social care systems have historically been procured, developed, and implemented separately from each other, meaning information can is not always shared easily across organisations.

The Scottish government says it is committed to develop a nationally consistent, integrated and accessible health and social care record.

However, panellists speaking at satellite session the week before Scotland’s annual digital health, housing and care event, DigiFest23, have raised concerns about the feasibility and risks this could bring within the very complex current system.

The panel told attendees that a new system must centre the desires of citizens and focus on collecting the ‘right kind of data’ that can improves people’s lives.

The session heard that this approach to ensuring the public needs come first in health and care data collection rather than solely in the name of efficiency savings must be a priority.

Panel member Dr Robin Williams, Director of the Institute for the Study of Science, Technology and Innovation (ISSTI) told attendees that the NHS has strategies “mandating better data flow” but without a concrete set of actions on how to make this happen in reality.

Dr Ron Culley, Chief Executive of Quarriers, said even getting internal NHS systems to join-up will be a challenge:

“NHS systems are labyrinthine in terms of the complexity of how they connect internally, whether it’s hospitals or GPs or beyond. It takes a lot of work just getting the actual internal NHS systems to hang together, never mind connect with wider systems.”

Competing agendas

Dr Robin Williams said that the data needs of biomedical researchers, teaching hospitals and commissioners do not necessarily match with that of GPs, patients and quality improvement actors in social care.

He told attendees that the wishes of more powerful and vocal groups have tipped the scales in their favour when it comes to what data is collected by the NHS and social care:

“We tend to talk about data integrations as if there were a single agenda.

“I think one of the difficulties we have, however, is in integrating the different requirements of different professional groups and of patients and their families whose agendas are so extraordinarily different. And some actors have more power in articulating their concerns.

“It’s a never-ending task of trying to identify which data is usefully shared, but unfortunately there are lots of people who fall through the cracks.”

The NHS in Scotland is directly managed by Scottish ministers, who are accountable to MSPs.

Dr Culley said these governance arrangements mean information is often collected in the name of political accountability, when instead it should focus on service improvement.

He raised concerns that this governance model and the way data is used in the NHS will be replicated within a new National Care Service:

“Ministerial accountability has oftentimes required the NHS to produce data for purposes which, truthly, aren’t that useful to simply satisfy the whim of a politician so they can stand up in parliament and say: “this is the performance of this health board or the NHS as a whole”.

“Accountability is important, of course, but I think data is better put to the use of improvement.

“I think we need to reflect in Scotland whether our current system of political accountability is serving the NHS well enough.”

Beyond efficiency

Home care provision arranged by local authorities in Scotland has been increasingly moving towards ‘time-and-task’ delivery.

Panellists agreed this approach to commissioning means the wrong types of data being prioritised, to satisfy commissioners’ needs for evidence of efficiency.

Attendees heard that such a focus has “stripped out” other goals around service improvements and safety.

Dr Ron Culley said that reforming these “invasive systems” requires a complete rethink of commissioning arrangements:

“For as long as we continue top commission that sort of arrangement, then we’re going to end up with that sort of outcome in terms of the development of digital solutions.

“If we want a joined-up system, with information flowing well from the perspective of the individual, it goes back to how third sector providers are commissioned to deliver care and support.”

Don’t lose the ‘social’ in social care

Panel member Dr Sam Smith, CEO of C-Change, said she is concerned about the social care

approach to data being subsumed by that of the NHS, which can “miss the things that are vitally important”.

Dr Smith told attendees:

“There's a great deal that could be learned from social care and the intimacy of the relational approach that we have. It would be great loss if we don’t preserve it.

“In health, we can take it down into units. In social care, I would hope we don’t industrialise and start to record the minutiae.

“We should encourage spontaneity and we should encourage good heart and the emotional approach to what we do. Anything that squashes that human spirit should be avoided like the plague.”

Taking a human rights-based approach to definition and data collection would enable  the creation of a workable system that can fit the needs of all citizens,  Dr Smith explained:

“That human and relational component is the bit that doesn't show up on anyone's database, doesn't show up on anyone's budgeted plan. But it is the bit that all of us know makes a difference in social care. I think unless we're really articulate about it – unless we hold to that – it's the bit that could get squashed out as we try and integrate, because it's the hardest thing to do.”