How the Care Information Exchange helped me manage my daughter’s care

The Care Information Exchange provides patients with online access to their health records so they can view them anywhere, including from the comfort of their own home or when out and about from their mobile phone. Patients can also share this record with their health and care professionals, family and carers.

Parker Moss used the Care Information Exchange to manage his daughter’s care. He shares his experience and the impact online access to her health records had on their lives.

My eight year old daughter, Vanessa, suffered for five years with neuroblastoma, one of the most fatal children’s cancers. We had over 800 nights in hospital and our care pathway was a very complex one, spanning three hospitals and also community care at home.

Two years ago I approached Sanjay Gautama, chief clinical information officer at Imperial College Healthcare NHS Trust, to ask for Vanessa’s test results to be sent to me electronically. Timing was fortunate as the Trust was just about to launch the Care Information Exchange to give patients access to their health records. We became the first paediatric user.

Using the Care Information Exchange

I was already the orchestrator of my daughter’s care before the Care Information Exchange was introduced. She was treated by oncologists, haematologists and respiratory physicians and I made sure they all had the latest information about her care. During the times that Vanessa was at school living a fairly normal life, she had nurses coming early every morning to take her blood for tests. Before the Care Information Exchange I had to get results of those tests by telephoning the hospital and finding a healthcare assistant or a nurse to help me. This took up to 45 minutes of my time each day, and involved reading long lists of numbers over the phone, interrupting the work of hospital staff. Getting online access changed all that.

Once I had a Care Information Exchange account, I started getting the results electronically on my phone at around 9.30 in the morning. I’d actually receive them before any nurse or doctor had seen them because the moment the Trust’s electronic patient record system published the results, they would come to my phone. While at work in a meeting, I could check her haemoglobin, urea, creatinine, neutrophils, platelets and red cell counts. And take the necessary action.

When her urea was high I’d email the school to ask them to immediately give Vanessa a bottle of water to rehydrate her. Low neutrophils meant her resistance to infection was low, so I would ask her teacher to be particularly careful about any children with illnesses in the class, or avoid taking her to cinemas or on public transport. If her platelets were low, which was often the case, this means she was at risk of bruising or internal bleeding so we would request no physical education at school and restrict her to quiet play.

How it helped us

The Care Information Exchange had a huge impact on my daughter’s life. It really equipped me to manage my daughter’s care efficiently. If I turned up to an A&E department or to another hospital, I could tell them my daughter’s haemoglobin is at 68 and she needs a transfusion, and they would believe me because I wasn’t just saying it. I had the official hospital record on my phone from a portal they could trust. It empowered me and it made my interactions with the doctors more efficient.

We also without a doubt avoided a lot of unplanned hospital admissions because I was able to be much more vigilant in real time with my daughter. By taking actions like avoiding the cinema when her white blood cell count was low we reduced the number of infections that required her to be rushed into hospital for antibiotics. These simple actions are very powerful as a cancer patient, to keep yourself happy at home. Having online access to her records kept my daughter safe, kept us feeling engaged in the process and gave us a sense of control.

How it can help other patients

It’s important not to assume patients need to be ‘sheltered’ from receiving information about their own health and care, and this is particularly true of patients with long term conditions. Many patients with long term conditions become skilled and efficient with the use of their health data. I really recommend the Care Information Exchange to hospitals and to patients. I’m sure it improved my daughter’s quality of life and it certainly saved time for both the clinical team and my family.

One concern people have about patients accessing their records is that clinical teams will be overwhelmed with questions and communication from patients, as a result of them having more information about their health. I think that clinical teams find exactly the opposite is the case. When you’re dealing with a long term condition, most of the questions you have are not urgent questions. I know not to use the Care Information Exchange for urgent or emergency enquiries, which means that the hospital understands that every time I actually call, it’s important. For the majority of the time I can send a message on the Care Information Exchange, I don’t expect a message back immediately. This stops me from constantly interrupting patient care on the ward by bleeping our medical team, which is good for the clinicians, good for other patients, and good for me, too.

Where do I hope to see things go in the future? I think in coming years we’ll have the option for self-administered blood tests using home-testing kits so we don’t have to wait for phlebotomists to turn up. We’ll be able to take the test and record the data ourselves. This will make handling cancer in the community much more like managing diabetes. Diabetes is a largely self-managed disease which is monitored at home and I think that living with cancer could become more like this for many patients, but the key is giving individuals access to their medical data in real time. Eventually I’d like to see all of my clinical teams across multiple hospitals sharing data and collaborating on this single platform and I hope that adoption of this kind of patient centred technology continues to spread.

The Care Information Exchange improved my daughter’s care in the last five years of her short life. Sadly, Vanessa died in September 2017. I’m grateful to the Trust team for investing in technology and empowering me to partner with them in the care of my daughter.

The Care Information Exchange is a project led by Imperial College Healthcare NHS Trust and funded by Imperial Health Charity. It gives patients across north west London secure online access to their medical records with the ability to share those records with their health and care professionals. Currently, the Care Information Exchange is available to patients from selected specialties, but we hope to be able to offer it more widely in the future.

If you are interested in using the Care Information Exchange, please complete the contact form on our website.

The Trust wishes to thank Parker for sharing this deeply personal experience.