There seem to be more and more demands on the health system, and not enough money to address them. Something has to change then. The answers seem to always lie in new organisational structures and metrics. They might help. But better use of technology might do far more, by enabling better care, delivered more effectively and efficiently. It might just benefit patients, clinicians and funders alike by encouraging new behaviours, diagnoses and engagement along the way.
Over the last three years I have spent a lot of time with clinicians in the UK trying to give my son the best care possible, so I write this as a parent not a healthcare expert. He suffered from encephalitis at birth, resulting in brain damage and the subsequent effects. As a result I've seen the best and worst of a health system, and learnt an incredible amount in the meantime (see http://www.strategy-business.com/blog/Leadership-Insights-from-a-Special-Needs-Parent?gko=28a79). I've come across plenty of caring and talented individuals doing the best they can, despite the technology they use and the processes they follow.
We only really care about the outcomes for our son, and the experience along the way. We want to him to experience no epileptic fits; to see improvements in his development; to spend minimal time in hospitals and making the arrangements to get there (so that we can spend more time with him); and an enjoyable, smooth process when we get there with individuals who care for us and our son.
In practice we spend a lot of time on the telephone making appointments (sent by post) or leaving messages for doctors. We repeat a lot of information to different medical staff, most of the time in our own hand-writing, and encourage each person to share information and talk each other. In practice, we are the 'integrators' of our son's care.
There's no one place to see all of the information on our son, whether that's his medical records or progress reports. We combine this information and analysis ourselves on our home PC and in multiple ring binders. Hours are spent every week finding information on the choices we face, and the experiences of others in a similar situation so that we can work out which avenue to pursue.
We receive periodic reports and data on my son's condition, typically through a monthly or quarterly appointment in a local or specialist hospital taking point-in-time readings of various aspects of his physical and mental development. We see doctors in single interactions, with some exceptions where we meet a number of specialists across a room; the language we hear and read tends to focus on medication, timescales and the process we follow with less emphasis on outcomes we are seeking.
My sense is that the picture could be quite different, and better, if we all use more technology. Imagine if we could use a personalised 'myhealth' app that captured and presented all of the relevant data, records, diagnoses and advice all in one place. With our permission, everyone involved in his care could access what they need to - there would be no need to ask us to repeat his history; we could therefore focus on the 'new' information. We could see where we are in the treatment process, who we could reach out to for help, and how various metrics benchmark against children in a similar demographic category so we get a sense of his development.
This app could be 'connected' in three important ways:
• to our doctors: we could use this app to connect to our doctors, whether through video calls or via e-mails. We'd judge together which form of communication worked best - from face to face to e-mails - and we would use the app as the basis of all communications.
• to other doctors in the UK or overseas: we could open up his data, anonymised, to other doctors to crowd-source ideas for his care and support across the world. More radically, perhaps we might use our 'allocation of public funding' to plug in to best brains around the world using a digital wallet (a bitcoin for health services if you like), using the app to share information. The world of healthcare would open up from local doctors in a national system to a more global network of doctors and medical professionals.
• to a health concierge - someone who could help us to collect and use information, guiding us through the process, saving us time in the sessions with clinicians asking no doubt questions that could be covered elsewhere.
Wearable technology could monitor his condition in real-time, providing data that could be shared with the doctors and the providers of the medication. This would improve their diagnoses and treatment plans, and contribute to R&D. We may do this for the goodwill of other patients or for a payment (in what becomes a more tradeable market for patient data). This real-time monitoring might then be used to help to anticipate seizures and then work with bionics to mitigate the safety risks.
In hospitals, doctors could use tablets to take down notes and refer to information; and they could use voice transcription apps to capture their views more quickly. Appointments could be screened by their complexity and then allocated to the right form of communication and engagement - from face-to-face to video conference (e.g. Facetime or Skype) to a telephone call to e-mail for a quick question. All of these developments would save their time and ours, improve the quality of experience and help to focus time on what really matters.
Of course, this all sounds simpler than it would be to do in practice. It would require upfront investment in technology, significant changes to how people work day to day, and a great deal of trust in people and organisations in a world where data are shared far more than before.
The healthcare provider (the NHS in the UK) therefore plays a role of:
• a trust or kitemark for a personalised application that patients could use.
• a standard-setter so that applications can interact with each other (e.g. in sharing data).
• a platform for third party companies to innovate (to encourage open innovation) new technology services.
• a concierge, guiding patients through the system.
It becomes the catalyst, and the broker for a network of provision. It opens up patients to the best possible care in far more flexible settings; the quality of diagnosis improves as doctors get access to information (more of it real-time) far more easily and hence solve problems more together. Technology helps everyone involved to focus on patient outcomes, improve engagement throughout the process and empower patients to self-solve.
I sense that the UK Government is looking to play this role, and to encourage technology to play a more substantive role in the provision of healthcare. The latest document sets out the developments: https://www.gov.uk/government/publications/the-uk-your-partner-for-digital-health-solutions/the-uk-your-partner-for-digital-health-solutions.
My encouragement to all involved is to invest in the technology, be bold in where and how it can be used, and experiment, perhaps in local pilot schemes. Choose doctors, managers, patients and their carers who are more amenable to try something new. I'm sure there are plenty of parents like me who will be more than willing to offer their views and ideas.
Thoughts welcome on this blog please!