by Jim Dawton, Director at Great Fridays, now an EPAM company
Last week Patients Know Best, a Great Fridays’ client, announced a partnership with the Irish Hospice Foundation to allow people to plan their end of life, digitally.
For those who don’t know Patients Know Best (PKB), it is the world’s first fully patient-controlled medical records system.
The founder, Dr Mohammad Al-Ubaydli has a rare genetic condition which means that he requires help from lots of people, all of whom contribute to his health. He became aware of how siloed his treatment was and he thought he was best placed to be in control of his own medical records. Step forward PKB.
Working “like a highly secure version of Facebook”, PKB enables the patient to give anyone involved in their care immediate online access to their entire medical history. Once connected, clinician and patient are then able to message securely through the site and hold online consultations. It also has many interesting features such us the ability to upload genome sequencing files and an entire medical dictionary.
The interface is digital, but the main difference (as lots of healthcare providers are now experimenting with EHRs) is that the patient owns the record. They can share it with whomever they choose, and they can take it from appointment to appointment, without having to start from the beginning again (how many times have we had to do that?) It also allows patients to monitor their health, with slightly richer information than number-of-steps-taken.
It could also create a better, or should I say healthier, clinician/patient relationship, certainly a more balanced and efficient one anyway.
This announcement in Ireland however is slightly different to the existing PKB service (although the two are connected). Currently in Ireland, all your end of life care plans e.g. DNR order; legal papers etc. are stored in a bottle in the fridge – I really mean it, a bottle in the fridge. The content is really detailed, excellent in fact, but paper based and obscurely stored.
PKB transferred all end of life plans into a citizen held end of life planning service – thinkahead.ie. The start of the roll out is this partnership announcement with the Irish Hospice Foundation. This partnership will put the patient at the centre, ensuring their end of life is exactly as they wish.
It’s not the only example of PKB looking into other healthcare areas. PKB now integrates with over 100 devices and apps including fitness trackers, blood pressure cuffs, glucose monitors and many web-connected healthcare device.
PKB is also working to digitise pregnancy records; teaching doctors how to hold online consultations, and has also recently announced a partnership with Dutch hospital Radboud University Medical Centre (UMC). Radboud UMC has created a service that visualises water intake, and using this service in conjunction with PKB they can work out if and when they can discharge patients, often leading to an earlier discharge and therefore saving the hospital precious bed space.
Now those who know me know that I don’t talk about patient-centric healthcare but rather consumer-centric healthcare – products and services that appeal to every part of the healthcare ecosystem, be they patients, carers, clinicians, managers, pharmacists…. So, I don’t generally share the view that patients do know best, but anything that makes us take more responsibility for our health, wellness and illness – and equips those around us to deliver better healthcare outcomes–has got to be a good thing. Without a doubt, the need to deliver more healthcare outside hospitals means we need to rebalance the current clinician/patient dynamic. And as social care and end of life care both become more integrated with healthcare, and a dramatically aging population loads an ever-increasing burden on the State, we are going to have to consider a far wider circle of care (family, friends, neighbours, third sector…) in our balancing act. So there’s plenty of space and need for PKB, and many consumer-driven products and services, to grow into this space.
Great Fridays has been working with PKB on all these projects, offering service design expertise to help make their services more usable, accessible and appealing to a wider market. And with PKB now working in 54 sites across 7 countries, we feel there’s plenty of scope for us to have a long and healthy relationship.