Access to personal health information (8) Personal health booklets (3)

8 July, 2020

Kishwar [Kishwar Azad, Bangladesh:, patient held records aid patient engagement and patient activation. Steve Tomlinson, a professor in diabetology in the 1980's described two types of patients: "Internally controlled patients" who accepted that diabetes was their concern and that they needed to have knowledge, skills and application to manage their diabetes and "externally controlled patients" who felt that the hospital, doctor or nurse should manage their diabetes. He felt that internally controlled patients had better outcomes. I believe that this is true for all long term conditions and that the patient having their own record and access to our copies of the clinical record is an important aid for patients.

Interestingly all maternity patients have held their medical records in the UK for decades:

Maternity notes have been held by patients in the United Kingdom for at least 30 years. Here are some references:


“Access to your maternity records

“All pregnant women in Northern Ireland are given their own hand held maternity record so that they have access to their maternity notes and records throughout their pregnancy.

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About your maternity hand held record

The maternity hand held record is a paper file that contains all your health and medical information throughout your pregnancy. It will be used to record notes about your care and treatment and gives helpful information and advice about pregnancy.

The record will also be used to keep details of your birth plan � a simmple and clear way to let your midwife know what you would like during labour and delivery.

When you will get your maternity record

You will get your maternity record at the start of your pregnancy and you will keep it until after you have had your baby.

What you should do with your maternity record

You should keep your maternity record safe and make sure you bring it with you to all hospital appointments or admissions, GP appointments or when you arrive at the hospital in labour.

If you lose your maternity record, you should contact your midwife or maternity unit as soon as possible.

What happens your record once you've had your baby

The notes will be returned to your Health and Social Care Trust at the end of your maternity care.


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 . 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:



HIFA profile: Richard Fitton is a retired family doctor - GP, British Medical Association. Professional interests: Health literacy, patient partnership of trust and implementation of healthcare with professionals, family and public involvement in the prevention of modern lifestyle diseases, patients using access to professional records to overcome confidentiality barriers to care, patients as part of the policing of the use of their patient data

Email address: richardpeterfitton7 AT