1953 was a historic year: Elizabeth was crowned Queen; Hillary and Tenzing were first to climb mount Everest; Stalin died; and Watson and Crick published a short paper explaining the structure of DNA. Unlike the first three events, few members of the press attended Watson and Crick’s press conference, and the paper received by far the least publicity. For a few months, few paid attention, and fewer still understood the seminal importance of the paper. This is how the genomics revolution started: quietly.
The biggest barrier to doctors conducting online consultations is that no one taught them how to do so. Although many doctors asked in public about online consultations, voicing concerns about patient safety and demands on time, the real reason is that no one taught them how to consult online safely and efficiently. As I wrote in The Guardian, we know that online consultations work. And as Action for ME showed in its public consultation with members, we know that patients want online consultations. So what remains is to teach tomorrow’s doctors.
Which makes Leicester’s course a historic one, and why we are proud to make Patients Know Best available to help train their students. As part of our work together, we will create a curriculum and make it available to other medical schools through an open access licence. If you would like to use PKB to teach your students how to consult online, contact us.
Patients need to be able to consult their doctor online. Having to take half a day off work for a 10-minute consultation is a high price to pay when the technology exists that would allow it to be done online from the patient’s home or work. For some patients, the travel involved in getting to an appointment is harmful in itself. I have seen patients with physical disabilities in pain from the long distances they have had to travel to see their specialist. In a few cases, the appointment itself has risks – cystic fibrosis patients can give each other infections when sat together in the same waiting room.
In my opinion, it’s important to offer online consultations when they are appropriate. But for the best of reasons, many in the NHS remain deeply sceptical about consulting online. Time-pressed doctors and GPs are not sure what an online consultation actually is. They fear it might take up even more of their time.
We are happy to welcome the first of many GP practices in Kent to join PKB to work with the community teams and social care to improve communication and management for their patients with long-term conditions. These include: Manor Road Doctor’s Surgery, St Richard’s Road and Golf Road Surgeries and Sheppey Community Hospital.
“Doctor and programmer Dr. Al-Ubaydli founded the personal health record software company Patients Know Best. It goes beyond giving patients access to their records to giving them control in a format that can be shared with any health professional. It is now ranked the best of its kind by the UK government.”
This was the launch year of HSJ Clinical Leaders, and the judging panel sought to identify those clinicians making the greatest impact on health policy, service transformation, and innovation. The HSJ team prepared a long list of candidates over the spring and a panel of judges was put together with knowledge of influence in healthcare and who represent a broad spectrum of opinion.
We are thrilled to announce that Deloitte has selected Patients Know Best to be part of its second wave of Social Innovation Pioneers. The program is a great opportunity for Patients Know Best to receive tailored in-kind support and collaborate with senior advisors in the firm with deep knowledge in the healthcare market.
Deloitte has set aside £1m worth of services to help social enterprises such as Patients Know Best grow their businesses and scale their impact. Since the flagship program began in 2012, Deloitte has offered 3,000 volunteer hours and 4,000 hours of pro-bono support, which includes strategy support, financial modelling, corporate property advice, website development and impact measurement.
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.