The benefits of providing more data to patients and improving the patient experience
"Patients being enabled to see their own results empowers them to manage their own condition. It also allows us to design remote management pathways meaning that patients will no longer need to come to the hospital regularly. This is better for the patients and better for the NHS; having patients who have already seen problem-results mean they are prepared for the discussion we need to have."
Dr John Laurie, Haematology Consultant, University Hospital Sussex
My Health and Care Record is an interactive online personal health record and Patient Engagement Portal available on a smartphone, tablet, or desktop to adults in Sussex. Medical information is available to users and their healthcare team, including test results, appointments, discharge letters, care plans and medications. A symptom tracker and resource library also encourage users to take an increased role in monitoring their own health and wellbeing. Adults can access My Health and Care Record, a platform powered by Patients Know Best.
Blood test results were made available through My Health and Care Record at University Hospitals Sussex NHS Foundation Trust West in May 2021, University Hospitals Sussex NHS Foundation Trust East in October 2021, and East Sussex Healthcare NHS Trust in March 2022. This implementation has improved patient experience and allowed the design of remote management pathways which have created efficiencies for clinical and administrative staff. This implementation has also improved patient experience, through access to quicker results, a historical trajectory of results, and detailed breakdown of blood components.
What was the situation?
How does it work?
Approximately 400,000 patients in Sussex are now able to receive blood test results through My Health and Care Record. For patients at University Hospitals Sussex NHS Foundation Trust, this may be immediately for some routine results, while patients at East Sussex Healthcare NHS Trust will receive routine blood test results after three-days. Both Trusts have a 28-day delay respectively for some diagnostic tests such as hormone testing, while some results such as HIV are not released as they require clinical discussions with the patient.
Results will appear in red if considered out of the normal range. If the patient would like further explanatory information, they can click on the name of the blood test result and will be directed to the Lab Tests Online. There is also guidance on the test results page advising the patient to contact their clinician if concerned about the test result.
Outcomes
The Trusts have documented many benefits for both clinicians and patients:
- Reduced burden for clinical and administrative staff in responding to enquiries.
- Quicker access to medical information from other Trusts for clinicians.
- Enhanced patient experience through real-time results and gaining a sense of control.
- Detailed results for patients which provide a deeper understanding of condition.
- Increased confidence for patients in managing their health condition.
- Able to click the name of the blood test to be directed to “lab tests online” (recommended by the NHS) providing further information about the tests.
Clinical experience
Dr John Laurie, Haematology Consultant, University Hospital Sussex
We have many patients who require follow up for chronic conditions throughout their life in the haematology department. Patients being enabled to see their own results empowers them to manage their own condition. It also allows us to design remote management pathways meaning that patients will no longer need to come to the hospital regularly. This is better for the patients and better for the NHS; having patients who have already seen problem-results mean they are prepared for the discussion we need to have.
Some of my patients contact me when they see a concerning result before I have. They may not have a clinic appointment coming up, so this allows us to deal with that issue straightaway whereas previously it would not have been picked up till later. And being able to see results from a different hospital when I am based in Worthing is invaluable. Previously we would not have had access to this and would often have to email around trying to get results from other teams.
All of this empowers patients who report feeling more in control. It’s a really common complaint from patients - especially those with serious illnesses - that they feel unable to cope with what’s going on, feel things are being done to them and being overwhelmed. Access to their results goes some of the way to solving this.
Our nurse and administrative teams get many calls chasing results and patient access to blood test results helps with that. We sometimes have a clinic appointment booked to go through a certain result. If that result is not available on the day that appointment is wasted as the patient still attends. If the patient knows the result is still not ready, they can move their appointment and save their time and ours.
Supporting prostate cancer patients through My Health and Care Record in the uro-oncology department
My Health and Care Record (MHCR) is an interactive online personal health record and Patient Engagement Portal available on a smartphone, tablet, or desktop to adults in Sussex. Medical information is available to users and their healthcare team, including test results, appointments, discharge letters, care plans and medications. A symptom tracker and resource library also encourage users to take an increased role in monitoring their own health and wellbeing. Adults can access My Health and Care Record, a platform powered by Patients Know Best.
The implementation of My Health and Care Record through a Patient Initiated Follow Up approach (PIFU) has proven beneficial for both clinician and patients alike at East Sussex Healthcare Trust (ESHT). PIFU is a programme that allows patients to self-monitor their condition after some initial training, so they do not need to keep coming back to hospital for follow-ups. If there is an issue with their symptoms or blood test results, they have immediate access to a doctor. The nurse also reviews the blood test results within her working time but not at a specific time with the patient.
Through this PIFU approach, patients are actively engaged with the uro-oncology team through MHCR and can view blood test results, complete a symptom tracking questionnaire and read information, which is then reviewed by the specialist nurse who will feedback either that the results and symptoms reported are fine, so no appointment required, or organise an appointment if a clinical discussion is required. This has resulted in less time required to review blood tests and frees up appointments.
Patients with prostate cancer post-radiotherapy and radical treatment are managed through My Health and Care Record. Patients who are doing well in their recovery are selected for virtual reviews. The system utilises the MHCR website, powered by PKB, to manage patients. This is the first virtual clinic running in ESHT and the first time the Trust is communicating with patients this way.
The oncology team has created a symptoms assessment for our patients to fill on the MHCR website and there is an option for patients to message the team directly. All the patients on the programme are encouraged to use MHCR. Other teams and departments now want to explore the suitability of using MHCR for similar patient engagement. Izabela Przyczyna, Oncology Co-ordinator, East Sussex NHS Trust says: “Our approach empowers patients to look after themselves, reduces anxiety and encourages patients to ask their GP or medical teams looking after them for help”.
Patients undertake blood, Prostate Specific Antigen (PSA), and testosterone tests, and receive these results three days after the lab results. Seeing their blood test results on the MHCR system reassures them that everything is fine, and that their cancer is suppressed. Izabela says: “If they’re experiencing a new pain from, say gardening, it is reassuring for them to see the result of the blood test coming within the normal range”. These patients have been receiving long-term care and have developed knowledge and insight about their condition. They are usually aware that their PSA needs to be kept below two.
This remote pathway works by having the necessary clinicians in place. Two professionals have been allocated on the MHCR team. Patients know that they can message the oncology specialist team straight away if they are concerned about their blood test results or spot any discrepancy. The Oncology Nurse Specialist picks up their enquiry by email and is able to respond immediately. This is the quickest way of communicating with the uro-oncology team. Patients also have access to appointment diaries.
MHCR has reduced the number of times that patients are seen. The Oncology Nurse Specialist finds the method convenient and practical when patients message her on the MHCR website. It helps to keep communication with patients on track; she knows when patients are coming in and she can answer them immediately. She says: “Using this system, we have a clear record of the interaction and online discussion we have shared. This reduces misunderstandings that can occur over the telephone”.
Patient experience
Reduced burden for clinical and administrative staff
The below patients have had their names changed for anonymity
Gerald said: “I’ve been seen by several hospitals outside of Sussex, including King's College London, Southampton, and Portsmouth. It’s been useful to share the results on my phone, which also shows the history of my blood tests going back several months. I believe it saves time for the hospital and that has to be a big plus”.
James said: “Now that I’m so in touch with my results and have been doing this for a couple of years or so, I make my own judgement and decide on medication and timing of injections. I double-check with my doctor depending on the circumstances. My contact with haematology is less and as required. Equally if they spot some anomaly, they will contact me and advise. It allows me to understand what is going on. You get to know very quickly what to look out for and as a consequence what to worry about or not. It gives you a running commentary in a visual sense what’s happening to you. It’s quite reassuring following on the back of a major illness”.
Liam said: “It takes away the nervousness and that you have to phone the doctor. It needs to be rolled out in hospitals in London. It also notifies when the results are in, rather than asking and finding that they might not be”.
Specific blood test values are important to patients’ ongoing care. Patients can directly access them on MHCR, view the graph of results over time and consider whether this is in range for them or increasing/decreasing, rather than just being told “it’s fine” or that it has increased/reduced. Patients can then make an informed decision on whether the result is within parameters or if they need to contact a clinician.
Susan said: “Prior to MHCR, I would have to contact my GP directly in order to get actual values. This was frustrating when the Consultant has advised that I need to run my thyroxine level at the top of normal range. Just knowing that the result was “normal” didn’t suffice for me. This was a waste of my GP’s time”.
Real-time results
Many patients will receive test results when available. This has made the process for receiving test results more agile and reduced waiting time for patients.
Gerald said: “It can be as quick as 3-4 hours. Occasionally at busy times in the hospital on Wednesdays, Thursdays and Fridays it can take maybe 6 hours. For example, if my blood test is taken at say 9am, by midday my phone bleeps and my results are in”.
James said: “If I have my blood test, say a Thursday at 8:30am at my local GP, I have the results back by email at midday. Sometimes a bit later or a bit earlier. But the same day”.
Liam said: “I have blood tests at 6am and normally receive results by 11am. So, it normally takes about 4-5 hours to be analysed then posted”.
Sense of control
The experience reported suggests a sense of control gained by having immediate access to the results.
Gerald said: “It gives me a lot of comfort. It works both ways: When I’ve been poorly, it’s like a confirmation, “that’s why you don’t feel well”. Now that I am in recovery there’s nothing more satisfying than receiving a result telling you everything is fine. I feel very happy and encouraged by getting the results”.
Jane said: “I love this function given it’s been nigh on impossible to get hold of the actual values in the past. GP reception will just say it’s marked “no action” or similar. The GP marks a comment next to blood results when they are checked. The receptionists can only read the comment out not give the actual result.”
Detailed break-down of blood components
Patients find out their blood test results from receptionists or other staff. Administrative staff can only share clinician’s notes and would not be authorised to give a full break down of results. Through My Health and Care Record, patients now have access to a full breakdown of their blood count which provides a fuller picture of their health. Some patients appreciate this detailed breakdown and they have grown in confidence in analysing it.
Gerald said: “I have a history of losing blood, gastrointestinal bleeding, but despite endless tests, the source of the bleed has never been found. One of the signs of a bleed is my haemoglobin levels dropping. The blood test results provide confirmation of what is happening. That’s very comforting to know”.
James said: “I went through a series of treatments over several months and this culminated in a stem cell transplant in May 2015. I’ve been actively involved and interested in what’s been going on in my body since then. The components of the blood such as platelets, white blood cells, neutrophils etc and what they did was interesting for me”.
Liam said: “It’s good to keep on top of platelet count and what days I can exercise and what days I can eat certain foods. If it’s lower haemoglobin levels, then I eat more steak. It makes it easier. Some days I feel more tired than others, something that my blood test result will correlate with how I’m feeling. It will give me the answers that my counts are lower”.
