Communication is a key issue for clinicians and patients - without really effective communication and recording of information, diagnosis and treatment become almost impossible. Recording chronic pain, therefore, is a critical matter for patients with illnesses or injuries who attend specialist pain clinics. Typically, patients attend periodically and fill out lengthy patient questionnaires about their experiences of chronic pain over the previous three, or six, months. This reliance on memories of pain and lack of ‘real time’ data is a problem that has provoked commercial online healthcare solutions via ‘apps’. Dr Michael Lee and his colleagues who work in the Pain Clinic in Addenbrooke’s Hospital, felt that these tools were wide of the mark and applied for funding from the Evelyn Trust to develop a really effective, but flexible, technological solution.
“We recognised that some of the commercial or ‘free’ apps were very useful, but we knew that they could be better! They are limited to online use but not everyone has easy access to the internet. Most were inflexible – offering just a standard pain rating of zero to ten, from ‘no pain’ to ‘worst imaginable’, but no chance to record other symptoms that may be related, or to individualise the words or numbers used. Others apps are complicated and take time to complete. For ‘free’ apps, we were concerned about data ownership and wanted the standard of data protection that the NHS provides,” says Mike.
So the team at Addenbrooke’s began some pilot studies and consulted with patients through focus groups to crystallise their thinking on what necessary improvements were really critical. The result is RECORD-pain, an internet-based database system that allows patients and their clinicians to come up with different ways of recording pain or other symptoms, day by day in numbers, words, or whatever way they feel is meaningful. Patients can add information to track other issues, such as anxiety, depression, tiredness, insomnia – anything which may be related to their condition and where that detailed information could help with treatment. The system stores data securely in the NHS. Patients can enter the ratings using any PC, or an SMS text message and even via a landline. Those who have smart phones, can use a ‘progressive web app’, which means it can work to record data even when there is no mobile ‘phone signal or wi-fi in sight. RECORD-pain went into testing last year and is now being rolled out in the Addenbrooke’s Pain Clinic, with expressions of interest received from other local pain clinics across East Anglia and from researchers in the field of pain management.
“We’re excited by this system because it’s so inclusive – that’s of course a key issue for the NHS where we treat people from all age groups, backgrounds, and ethnicities. It’s easy to use, whatever communications technology people prefer and it can be tailored to suit anyone’s needs. The data is owned by the NHS and the patient - it becomes part of a patient’s record, rather than being given up to companies that offer these free apps for pain recording. With the help of the Evelyn Trust, we’ve filled a ‘gap in the market’ and provided a high quality tool that’s free to patients.”
You can find out more about the ground-breaking work of the University of Cambridge’s Division of Anaesthesia here: http://anaesthetics.medschl.cam.ac.uk/