I must start this blog with a competing interest. I’m the chair of Patients Know Best, a start up that aims to use information technology to enhance the relationship between patients and clinicians. In the long run we want to promote personal health records, where patients own all their records and can share them with whom they please, and online consultations.
I am not paid by the company but have some shares. In the long run I may lose the small amount of money I’ve invested or perhaps make some money, perhaps even a lot. I’m not, however, motivated by money (although how would I know that I wasn’t?) but by my conviction that the aims of the company can bring major benefits to patients and health care and by my admiration for the founder Mohammad Al-Ubaydli, a young doctor with a long term illness, deep understanding of software, and a determination to put patients at the centre of health care by giving them control of their records.
What follows is intercepted pseudonymous correspondence between a patient and a GP as the patient tries to persuade the GP to use Patients Know Best’s system so that she can consult online.
Dear Dr Today,
Can I ask you to accept the invitation to allow me to consult you online securely? I don’t usually consult you more than once a year, and I’m not expecting that to increase. I hope that the possibility of me being able to consult you online may make life easier for you and me.
Yours sincerely
Deidre Tomorrow
Dear Ms Tomorrow,
Yes, I have the request but have not acted on it yet.
I believe that this NHS mail address is safe for online discussions, but perhaps you know better.
I am reluctant to open up yet another line of communication, particularly if it is only for one patient, when I already have telephones, face to face, four email addresses, electronic hospital results, inhouse electronic notes, post from the Post Office, and post from the local hospital (not to mention my voices).
We discussed your initial suggestion at a partners’ meeting and the consensus was not to engage with your system.
I do use email quite a bit with patients, and the current system seems to work well. We are a small practice with continuity of staff, and most patients find us very accessible when compared with some other practices. We came third in the PCT for ease of access.
So, “no” is the current answer, but when I have time I will revisit that last email.
Yours sincerely
Dr Cyril Today FRCGP
Dear Dr Today,
Thank you for taking the time to respond to my email, and there is no rush about any of this. I know that you have higher priorities.
I’ve consulted with the people at Patients Know Best, and sadly I think that you are breaking the law. Sending clinical information insecurely is illegal and breaks the duties of a doctor to maintain confidentiality. NHS email is only secure when sending an email to another email address ending in NHS.net–in other words, other NHS clinicians. It provides no security when sending to non-NHS emails–that is those of patients. This is a common misunderstanding.
I don’t suppose that the risk is high as presumably the patients who consult you online are doing so willingly and are unlikely to complain–unless perhaps the information falls into the hands of others. Hospital information technology departments, which are no doubt highly risk averse, have banned sending messages to patients insecurely–even if patients sign a consent form saying they are willing to use an insecure method.
I empathise with the problem of receiving so many messages from so many sources, but I think that we are moving to a world where most messages will come in words electronically with paper disappearing and phone fading–because attempts at synchronous conversation are so inefficient. I already inhabit such a world, and I’m currently communicating with you from Alaska in the middle of the night your time.
Recognising the widespread concern about multiple accounts, Patients Know Best has integrated with NHS Mail so that patients’ messages are delivered securely to the inbox of any clinician with NHS mail. Clinicians still have to log into the web site to reply, but that is important to do so that you can see a patient’s previous conversations before replying. Systems like Outlook do not make this easy to do, leading to missed information.
Furthermore, storing patients’ online conversations inside your work inbox is poor practice as your colleagues cannot see your conversations. Perhaps you don’t do this, or perhaps you have a way of sharing such information with your colleagues. More difficult is the problem that other clinicians at other institutions who work with the same patient have no hope of seeing these messages. This means that it is the patients who are left with the burden of ferrying messages among clinical teams.
That’s why research shows that patients want a system that is friendly to them that allows them to work with all their clinical teams across all silos, including NHS and non-NHS ones. I think that it’s inevitable that more and more patients will want such systems, and it is surely better to get ahead of patients’ demands by setting up a truly patient-friendly system Unfortunately a single practice messaging system is doctor not patient focused and is ultimately not acceptable because it means the patient must use a different web site for each institution, and the institutions never share information at the patient level.
A proactive practice should encourage all patients to adopt a patient friendly system rather than wait for multiple patients to demand different systems.
I imagine you thinking “I hope that I’m retired before this terrible world arrives,” but there is strong evidence that using online consultations can save time for both doctors and patients time. For a patient a ten-minute face-to-face appointment may well be half a day off work as well as a journey. It does mean change, and there will be inevitable snags–but they can all be overcome.
I don’t want to end by irritating you–and perhaps I already have–but in no other industry do businesses think it is acceptable to reject new technologies for working with customers. You may not like the words industry, business, and customers, but health will have to catch up.
When the steamroller comes through you either end up part of the roller or part of the road. I’m sure that you’d like to keep moving.
Yours sincerely
Deidre Tomorrow
Dear Ms Tomorrow,
You have counted my wrinkles correctly. I will be retiring next year.
Despite my partners’ negativity I have handed this project to the practice manager.
Yours sincerely
Dr Cyril Today FRCGP
I have the consent of both the patient and the doctor to publish this correspondence.