When we talk about 'empowering the person' what we are really talking about is giving people the things they want, need and have often come to expect. To disempower people leads to frustration, uncertainty, lack of control and a lack of choice for those on the receiving end. The NHS doesn't mean to do this, but it hasn't traditionally empowered people to have control or even sufficient choice over their own care. But it doesn't have to be that way.
Maternity services, the community who support pregnant women and the women who use these services are pretty special in this regard. I've been fortunate enough to lead on the Maternity Transformation Programme's digital workstream for the previous 2 years, using digital as an enabler to support the future vision for maternity care. I've often heard the cliché 'the stars are aligned, the time is now'. Maternity is now getting the priority it deserves. There is surely nothing more important than a service that helps bring new life into our world. I think for maternity services, the lioness is roaring and everyone in the NHS can hear. There is a real demand from the people who have a voice in the professions and from the service users – women, partners, Mums, Dads.
If you look across the NHS there are few areas where you would find service users who have frequent repeated interactions across their pathway of care, are custodians of their care record and are using the NHS because they are generally healthy. The personal contract between care giver and the woman is quite unique - it's more of an equal footing than any other setting in my view. Freedom of access to their paper record by default. The thing is that across the country the only structured standardised thing about maternity notes or record is usually that it is A4 sized, about 3 inches thick, rammed with printed leaflets and if my experience is anything to go by, dog eared from the places it gets shoved on the way to and in between midwife appointments. But it is a rich thing. It is brimming with useful and interesting things. There are also many mysteries contained within it that need explaining. How do we make it a little more user friendly? Better Births, the National Maternity Review, sets out clearly that a woman should have access to her own electronic record and receive information tailored to her own needs. The problem is that electronic Personal Health Records and evidence of their use and benefit is limited in England.
So why bother with ePHRs or Maternity Digital Care Records?
- Safety - Validation of clinical information by the woman. Consistent shared data across settings
- Personalised - Specific to the woman – Her actual record. Legible information she wants to see and can understand
- Professional - Effective, efficient, economic, empathetic. Released time to care. A direct connection with the woman.
- Kinder & more family friendly - Accessible and portable. Able to understand her maternity journey at a time when it suits her
The golden opportunity is to present information relevant to the woman's own circumstances sat right beside her clinical record. The benefits of this not only apply to a better experience, such as that identified in 'Support Overdue' (by the WI and NCT), but also to improving outcomes. Things like self-care and management, prevention and understanding the choices available to pregnant women all contribute to reducing harm and some of the poorer outcomes that Better Births is trying to address. To make this real, this includes birth complications, low birth weight, premature birth, fetal alcohol syndrome, stillbirth and neonatal death or harm.
In 2018 we initiated pilots across 20 sites in England, working with women, maternity services and supportive system suppliers to provide a convenient means for pregnant women to access their electronic record. It is very much about proving whether or not ePHRs provide the benefits people believe to be there if they are embedded properly.
Our ambition is to provide 100,000 women with access to their electronic record by October 2019. To date, in the 14 sites currently live, we have provided access to over 22,000 women. More sites are due to go live and working with Maternity Voices Partnerships and midwives in these areas, we are gathering feedback, learning and working with suppliers to improve functionality and usability. We’re also linking in information from places like NHS.uk . As we develop more interoperable records across the care pathway, so too will the woman's record become more complete.
Throughout this work, choice is key. No one has to do this and it is an option, not a requirement. The evidence suggests that this is what women expect and as a digital savvy, healthy group of service users, it is the perfect place to start. What we learn could be the foundation for growing true citizen led lifetime electronic health records.
To find out more on the work of the Digital Maternity team get in touch: firstname.lastname@example.org