Which is part of the episode titled “A Great Disruption” because it is based on the wonderful book No Straight Lines by Alan Moore. Alan’s book pulled together some amazing stories about bottom-up innovation from across all industries and from all over the world. The episode featured several of these examples, including his section on Patients Know Best. (For the latter link to work, you need to log in with LinkedIn, Twitter or Facebook, but it is well worth it, the experience of reading the whole book and sharing it with contacts is a great one.)
It is always a pleasure to hear Alan speak. Here is a transcript of part of his interview:
We are talking about business and organisations inherently changing themselves to be socially organised and orientated around a different type of belief system. If you take an organisation that says by coming alongside our customers, by actually saying our customers are our co-creators, our co-workers, our marketeers, we are now having a very different type of dynamic relationship. We are learning as an organisation by listening and working with our customers. We are making better products because in fact our customers are telling us how to do that.
He really sums up what PKB allows clinicians to do. The patient, clinicians and carers all appear on the same “Team” tab in the user interface, because they all part of the same team. The clinicians view the patient as a co-creator of knowledge about the patient, and a co-worker in solving the patient’s problems. They also rely on the patient to spread information to other clinicians they encounter at other institutions, improving safety and lowering costs. The result is better health but also better health care systems.
I was impressed by how much Peter already knew about us, he and his team had done their home work, and it meant the questions he delved into were detailed and thoughtful. It was a pleasure to be included in the program. The program also included an interview with Dr Simon Gabe, consultant at St Mark’s Hospital. His work on patient-controlled records was highlighted by the Patient Information Forum as the gold standard for patient record access, and it worth watching videos of him and his patients talking about PKB. He sums things up beautifully:
Before this, and this is still what happens, is you ask someone to give you the relevant bits of the notes to photocopy them, and they then form parts of your notes. It does work, it’s not a problem, except sometimes they don’t photocopy the right bits, or the bits that you particularly want. And part of that means that tests can get repeated and that can be unnecessary, unnecessary blood tests, unnecessary x-rays, and that’s more serious. The other thing that I really like about this is that the focus is the right way round and the focus is very much on the patient, and it’s the patient who controls their notes, and who allows people to have access to them. If you think about it, what happens in hospitals and GP surgeries at the moment is the very opposite. We’re in control of the notes, and patients have to request to see it, and the very opposite is happening for Patients Know Best. And that’s fundamentally correct, because if it’s you, if it’s your notes, and you want to see them, somehow it seems wrong that you have to request permission to do that.
The diagram shows 4 levels on the “road to full personal health records”. Only PKB reaches level 4, as demonstrated by sites like Great Ormond Street Hospital (case study) and St Mark’s Hospital (case study). Level 3 is also only reached by PKB, and is how most of our customers begin.
I want to explain why the other solutions do not reach above level 2B. The next highest exemplar site was South London and Maudsley NHS Foundation Trust with its integration with Microsoft HealthVault to make a patient portal. HealthVault integrations always end up delivering limited benefits, despite high upfront investments. The reason is that HealthVault itself is just a storage environment. It does not include any immediately useful tools for the patient or clinician. So the IT department of the institution has to build these tools from scratch to deliver productivity benefits to staff and patients. These investments often start at $1 million, and by that point, the institution feels it must put all its branding and tight integration on the portal. But as soon as it does so, no other institution‘s staff will agree to use the portal. So the patient does not get the safety of integrated care, and the institution that invested in HealthVault does not get the productivity benefits of collaboration across multiple clinical teams.
By contrast, clinicians can become productive within 1 hour using PKB, inviting all their patients to work with them online, and inviting clinicians from any other institution to co-operate. The model works, and there is no upfront investment, just an annual subscription fee based on usage.
It is worth noting that the much lauded Kaiser Permanente (KP) only reaches level 1B. In other words, KP does not have a personal health record, it has a highly limited institutional record, designed specifically to lock the patient to only receiving care at KP, and blocking the patient’s ability to transfer their records when their job or health insurance plan changes. Policy makers should be aware of this and push for true patient-controlled records as the only solution that suits citizens’ needs.
My first article about Patients Know Best came out in today’s issue of The European Business Review, Europe’s top business journal. The audience is important as we begin to explain to business leaders, including managers and commissioners, the importance and mechanics of patient control.
It was not until the 18th century that scientists accepted the existence of queen bees. Until that point they insisted that only a “king bee” could be in control. But the queen had always been in control, it just took us a while to believe and understand this. Similarly, around the world, patients are already in control. As more people believe and understand this, they design the health care system differently. This is the reason that hospitals, patient charities, pharmaceutical companies, insurance companies and government payers around the world are adopting Patients Know Best, a patient-controlled medical records system.
Al-Jazeera English recently recorded a series of episodes titled “Apps for Good”, about smartphone apps that do good in the world. So on Saturday, repeated during the news hours as part of the “Tapping into Technology” segment, Al-Jazeera aired this video:
I am still surprised by just how much effort goes into recording a two-minute TV segment.
BMJ editor, Dr Fiona Godlee, wrote an editorial today about integrated care because of a recent paper about a pilot scheme in North West London to share data across NHS institutions. North West London’s attempt is laudable, but as Fiona points out, it is not enough – the only way to get truly integrated care is through patient-controlled records:
As for designing better pathways of care, it turns out that the only people who know how the whole system works are the patients. Their input transformed the North West London scheme and became, like integrated care itself, obvious. Only they cross the organisational boundaries, a fact that underlines the wisdom and importance of efforts to give patients control of their own medical records (http://www.patientsknowbest.com/).
All other approaches to integrated care fail. Institution-focused collaboration always exclude all but a handful of original providers from sharing data, because any collaboration beyond a hanful of participants becomes… a handful. The sheer bureaucracy of co-ordination overwhelms participants in these top-down approaches. Social enterprises, social workers, and any innovators in health care provision are invetiably left out. This is why charities like Thalidomide Trust use PKB to provide better care to their patients.
Furthermore, regional collaborations balkanize medical data. Not only do patients and clinicians crossing geographical boundaries suffer, but the regional clusters are too small to attract a marketplace of solution providers. So citizens are unable to use the consumer-driven innovators from other parts of the world, locked into monopoloy contracts and service quality. By contrast PKB provides an open platform for smartphone app developers from all over the world to create new services for patients.
The investments we are receiving are part of our global expansion. We will be announcing more news of our international partners in the next few weeks and the growth has been spurred by proof that the model works in the UK, and that US institutions are signing up as customers. We built Patients Know Best from day 1 as a global platform, HIPAA-compliant for US professionals, Data Protection Act-compliant for EU ones, and available to any citizen anywhere in the world.
Hospital IT Europe has written about our work with Thalidomide Trust. Two years ago, they approached us about providing Patients Know Best to all its beneficiaries. The more I learned about the problems they faced as patients, the more proud I was to be working with the Trust. It was particularly interesting to me to see how beneficiaries had adapted in their lives, growing up, earning jobs, getting married, having children. Not only did they overcome their physical disabilities, they also overcame society’s preconceptions.
The Trust is focused on empowering its beneficiaires to take control of their health. Patients Know Best is a key part of this, and an example of this is the Trust’s x-ray image scanning efforts. They are storing the images and reports inside each patient’s account.
They do this for three reasons. First, they want each beneficiary to understand his or her own health. Having the images and the reports is part of that understanding. Second, these x-rays are important for safety. A patient in the emergency department can calm a doctor’s anxiety about an x-ray image, by showing past x-ray images with the same abnormality. Conversely, they can warn a doctor to be careful, as a past x-ray image can show an abnormality that the doctor was not expecting. Finally, because Patients Know Best is HIPAA-compliant for the USA and Data Protection Act-compliant for the EU, patients can use their account for online consultations with any professional anywhere in the world. So Trust staff can facilitate consultations with super-specialists in London, Germany and Sweden.
The Trust has pioneered the model of patient charities facilitating better health care for their members. We will be announcing more charities doing so in the coming months. If you would like to learn how to make our software available to your members, do drop us a line. And in the meantime, I leave you with the full article from Hospital IT Europe.