Biden Vs Faulkner, whose data is it any way.
Having a common enemy, a common ‘bad guy’ will always help a cause. A figurehead to rally against is one of the best motivators for the creation of a movement. Maybe in the last few weeks the Biden vs Faulkner showdown will be the catalyst for a new lease of life for the patient data movement. If the reports are true the Chief Executive of Epic; the Digital Health multinational may have ignited a new enthusiasm for patient data openness, by challenging Joe Bidden as to why on earth a patient would want access to their own data.
The conversation is said to have gone like this; Faulkner was amongst a group of healthcare executives gathered together to discuss with Biden the Cancer Moon-shot. The internet based magazine Politico reported that Faulkner raised questions about the utility of patients being given access to their own health records in a digital format.
“Why do you want your medical records? They’re a thousand pages of which you will understand 10,” she allegedly told Biden.
“None of your business why, I, the patient want access to my information,” Biden is said to have responded. “If I need to, I’ll find someone to explain them to me and, by the way, I will understand a whole lot more than you think I do!”
The culture of digital health organisations in the UK and Ireland has changed over the last decade so substantially that Faulkner’s comments sent many of us into shock. I distinctly remember arriving in Ireland and in 2014 and being asked to take part in a patient advocacy roundtable. At this event the gentleman who represented the Parkinson’s patients of Ireland towered over me and demanded that I, “… stop pussy footing around and get my data shared if it means that a cure can be found for this god-awful disease!” His premise was that if I didn’t he would and he wanted his information now, on a memory stick so that he could give it to an academic.
In the US we are told that the way the patient portal payment structure was created for meaningful use means that vendors were paid on a ‘log in attempt’ basis, this meant it was in the vendors interest to lodge a member of staff in waiting rooms and ‘help’ patients log in to their records, just the once. Pretty much taking the meaning of the phrase meaningful use and throwing it away.
We can also think back to the National Programme for IT in the UK and its version of patient access, HealthSpace, I can place a clear reason why that didn’t take off too, it was so very very hard to authenticate yourself before you could use the service. It required to visit a library with three forms of ID, to receive a letter with a PIN and then set up a significant password structure, the drop off rate before people got to view their records was huge, and understandably so. And yet here we are in 2017 with a new start up bank, N26, who have the technology to allow you to authenticate who you are with a camera on a mobile phone, from the safety of your own bedroom you can have a bank account up and running in eight minutes! Technology moves quickly and really does allow us to implement the digital health dreams we have.
So there are a few technology examples of Faulkner being right, well at least the technology not facilitating her being wrong! But, now glance over to Finland and Catalonia two regions that have proven the ideals that Biden has described for patient access to information to not just be the art of the possible but be actually here now, information in the hands of the patient and making a difference to the care being delivered.
The first time I heard the solution that Finland has created to this issue I was in awe; the work is a partnership with Microsoft and shows the innovation and ingenuity of the possible through partnership, clever thinking and a will to put the patient at the centre of what can be done. In Finland the national electronic health record is effectively a set of data that is mirrored to two windows. The first is the clinical EHR, the first place the clinician sees information about their patient, the second window is the patient version of the same, the key difference is the patient can add information to the record via their ‘window’. The patient can add free text or wearable gathered data or home held diagnostic information, the clinician can see this information and decide to add it to the clinical side of the record. The clinical governance of the information is still held with the clinician but the ability is now presented to the clinician for them to value the patient input to the record and move it over to their ‘window’ on the information, thus giving it the clinical validity it deserves.
Suddenly the comment made by Faulkner become even more ludicrous; the patient information is not only about them and owned by them but now has real clinically valid input into the care being prescribed and practiced, let’s not forget that this is the person Faulkner is worried won’t understand the information, they are now an author of some of the information.
The next success story here must be the amazing work that Tic-Salut have done across Catalonia in this area. They have created an eco-system throughout the region that has driven a new type of credibility to the delivery of patient access to information. The proliferation of health apps is huge; in Catalonia the market place for these apps to be released into has been created by the health system itself. An accredited app store for the healthcare system built to allow patients and clinicians to use health apps with confidence. Unique though to Catalonia is the arrangements put in place around the data that these apps can use. If you have an accredited health app one of the conditions is where the data is made available, not just within the app but in a secure, audited and protected way the data can be used within the health care systems own information systems. What Tic-Salut have done here is ensure that the lines between clinical data created by clinicians can be blurred with the data created or collected by the citizen and patient without overloading the clinical team with data, after all data is only useful when it becomes information.
Then we come to our own projects; in Ireland we have a decade long history of under investment in digital health to first get over to allow patients digital access to information, but, in Epilepsy we are seeing an almost immediate patient impact by having access to information. The patient portal trialled in the delivery of care for patients with Epilepsy has been a huge success for many reasons. First and foremost the portal and its functions have been co-designed by the patients and families themselves, the elements you can do with the portal are exactly what the patient wanted to be able to do. So viewing the clinical note is there as a function that has been seen as being useful but also the new ability to record a seizure, its severity and frequency and type has enabled a new paradigm in the delivery of care.
The ability for a patient to be significantly involved in reviews of medication efficacy through the capture of data has seen around 100 patients come off anti-epilepsy drugs since the portal has been introduced. I have championed digital solutions for the care of epilepsy since coming to Ireland in 2014, largely because of the passion that clinicians and patients, the careers and the special interest groups have shown for what can be done here. I hope that this light house on the art of the possible in Ireland can continue in to 2018.
In Ireland we have a plethora of digital health start-ups and new organisations. The Jinga Life team for me are delivering a solution that is a ‘light at the end of the tunnel’ for what can be done in Ireland. A design unlike any I have seen in healthcare, truly a delight to use and see. The concepts of Jinga Life is to concentrate on the key member of the family who is ‘tasked’ with the care organisation of the family. In their research over 90% of care is managed and organised by the female in the family. The Jinga Life portal allows the family member a tool to organise that care and to provide new data that can become clinical information to the clinician. Part of the success on the build of Jinga Life is its clinical and patient focus, definitely one to watch and one that I hope will show Faulkner yet again how wrong she is.
In the same week that Ireland launches its Open Data portal this data debate rages on, whose data is it anyway? Much can be discussed here but one thing we do know, its not the data of the digital vendors that are out there, and we need to seize back the ability to get at that data. A patient engaged, involved and aware of the information that is used for their care is a patient that can be part of the clinical delivery process, a patient empowered to help themselves.