Data in healthcare – my journey

Recently my colleague Paul blogged about the role of data in tackling the ‘no show’ problem in the NHS. As a Type 1 diabetic, I have my fair share of hospital appointments and am living proof of how timely reminders via the right channel can make all the difference to juggling numerous appointments with a busy life.

In fact, it’s not just hospital appointments. Having started working at Experian at the same time as being diagnosed, I’ve gained a whole new perspective on the important role of data in the NHS, from managing my illness through to getting the right medication and I wanted to share my experience of that.

First off let me set the scene. Type 1 diabetes is an autoimmune disease that causes the immune system to attack and kill the insulin-producing cells in the pancreas. Insulin works like a key which unlocks cells in the body, allowing them to take in glucose from the bloodstream.

A healthy pancreas detects how much glucose is floating around in the blood and releases the right amount of insulin to allow the cells to take in glucose without taking too much from the bloodstream. However, my pancreas doesn’t do this, so I have to manually monitor my blood sugar levels and calculate the right amount of insulin to inject based on how much sugar is already in my blood, how many carbohydrates I am going to eat, the weather, my stress levels, if I’m sick, tired etc.

Data is changing healthcare

Having to be my own pancreas means that being provided with data I can trust is vital. The main data that I rely on is provided by my blood sugar testing equipment, which allows me to check my levels are safe.

30 years ago, the only way to test your blood sugar was with home urine tests. As this did not directly test your blood, the data was both vague and inaccurate which led to more instances of complications and premature death.

Nowadays, diabetics can test blood sugar levels directly with blood sugar monitors and sensors. Monitors test a sample of your blood (through a finger prick), giving a snapshot of your blood sugar at that time.

Sensors now go even further by constantly testing your blood sugar levels and sending the results to your device via Bluetooth – allowing you to see new data in 5 minute intervals, 24/7. This uncovers large chunks of data that previously would have been lost, especially overnight. Alarms can also be set to alert me if I go too high or low, allowing me to get on with my day with less worry and reducing the chances of needing to go to the hospital due to high or low blood sugar.

The wealth of data this creates enables me and my healthcare team to see patterns and trends in my blood sugar readings, following certain foods or activities. It’s crucial that this data is accurate as we rely on it to make changes to my insulin regime, helping me achieve greater control over my blood sugar levels.

Contact (data) is key

Having a chronic illness goes hand in hand with a deluge of medical appointments. I regularly see my GP, Consultant, Diabetes Specialist Nurse, Dietitian and am often referred to other specialists on an ad-hoc basis. These individuals work in different clinics, in different areas of London. It’s vital therefore that they all have access to my accurate, and up-to-date contact data to let me know when and where I have appointments, and that all my updated medical records are consolidated (often called a Single Patient View).

The NHS have a massive, £1bn, do-not-attend problem (not from me I might add) and it’s likely that at least some of the solution to this lies in having accurate contact data for patients as well as knowing the best way to contact them and the risk of a do-not-attend (something Experian can help with via our Patient Propensity data). I’ve found that initial communication about appointments occurs by post. However, this can cause issues when people move away and the clinic/hospital is not aware, because the patient won’t be told about their appointment and will therefore not attend. To help solve this, many NHS organisations use Movers data from Experian to regularly check their address data quality.

A helpful NHS initiative that has been set up recently is a text service that reminds a patient about their appointment the day before it is scheduled. I find it helpful as receiving a text has previously reminded me about an appointment I had forgotten about and provides you with a simple way to cancel the appointment, reducing the likelihood of missing one completely.

Obviously for this to work, all the clinics/health professionals need to have is my consent to be able to contact me for this reason and my current mobile number recorded accurately so that even if I miss the appointment letter, I am reminded later. Each missed appointment costs the NHS £120 so it is easy to see the return on investment for ensuring accurate and up-to-date contact data for communication through these channels – something that can be easily done through capture tools and regular cleansing.

I am very lucky to live in the UK and therefore receive my insulin and blood testing equipment on the NHS through prescriptions. Recently, it has been made possible to order prescriptions online and have them delivered to your home. This has been life changing but obviously means that it is very important that the pharmacy have an accurate address so that my prescriptions are delivered to the right place at the right time. Going without insulin for more than half a day would mean a trip to hospital. One night in a hospital will cost the NHS the value of my meal, bedding, staff time not to mention the bed itself which could be by someone with a less preventable problem. Meanwhile, a day’s supply of insulin only costs around £1.75 so it is in both the patient’s and NHS’s interest that prescriptions are delivered to the right people at the right time.

Healthy data enables healthy patients

This post has mainly focused on diabetes (that’s all I know) but I hope I have given you a snapshot example of why good quality data is vital for both the patient and the NHS. Access to good quality data about their own health allows the patient to self-manage, giving them better quality of life and reducing the cost to the NHS with fewer hospital trips and treatments needed. Furthermore, accurate contact data is the key to reducing missed appointments and thus wasted NHS time and money. Accurate address and mobile phone data means that the patient is reminded several times about their appointment and ensures that their prescriptions reach the right place at the right time.

Read more about how we can help healthcare organisations with their contact data and maintaining a single patient view in our ‘Healthcare Hub’.