We have been working closely with Luton and Dunstable for a few years now to help provide their inflammatory bowel disease patients with a web based tool, PKB, to enable clinicians to monitor and help patients self manage within the community. We’ve asked both clinicians and patients to talk about why and how PKB worked for them. We like to highlight a few of their stories.
Modern medicine is built on specialisation and as the patient goes from GP to specialist to care takers and back to GP, information travels in pieces, often times in the post, and most significantly separate from the patient. As PKB’s CEO Dr. Mohammad Al-Ubaydli tells Telegraph “patients are best placed to be in control of their medical records, because they are the only ones who have been to all the consultations.”
So what does it look like if patients were given access to their records? Continue reading
We’re proud to announce that our very own CEO and founder, Dr. Mohammad Al-Ubaydli, has been picked to be part of the top 10 social and tech entrepreneurs in the UK by Nesta, an innovation charity dedicated to bringing great ideas to life. This means a lot to us at PKB that the ideas and work we’re doing in helping to empower patients within the healthcare network is recognized.
More than that, we are happy to have Dr. Al-Ubaydli to be part of a group of social, tech entrepreneurs that is representative of the exciting new advances that technology is bringing to the many social issues today from education to data.
Click to read more about Nesta’s 10 Tech Heroes for Good.
BlueButton is a US concept that symbolizes the ability for patients to download their medical record and share them with others. This concept utilizes the technology to increase dialog around patients with their carers and healthcare providers and the wider care network.
PKB pledges to provide Blue Button support and we built our product to support the data structure required by US clients per the Blue Button guidelines. And now this is becoming realized in the UK. At the NHS Expo in Manchester this past week, we had the opportunity to demonstrate our support for Blue Button.
This morning we have added lots more devices and app integrations into your PKB account. You can now automatically upload your weight using a Vitadock pair of scales; track your heart rate using a Withings pulse; monitor your blood oxygen levels using iHealthbeat‘s oximeter; upload your glucose measurements using your iPhone. All these devices are available from your local pharmacy chain or on Amazon for $100-200.
And your doctor will love you for providing these data because they need the data accurately and urgently to give you accurate timely advice about how to change your treatment without making you travel all the way to the hospital. Paper diaries are no good for this. Not only are they difficult and late to analyse for clinicians, but they are also known as “car park diaries” because patients fill them out in the car park just before the appointment. Paper is inconvenient for everyone, while these devices will automatically and instantly upload the data.
Back in 2008, our first business plan identified the “family chief medical officer”:
more often than not a woman, and typically from the age group of the “sandwich generation”, looking after elderly parents and her young children. The fCMO has to manage the health care of several family members but lacks the time to attend all their appointments. She also needs to collate summaries of health care status before each appointment, e.g. the vaccination history of children.
As we started rolling out the software, we focused on hospitals who wanted to empower their patients rather than working directly with patients ourselves.
And then we heard from Johnny Walker, whose vision was focused on empowering the fCMO with a whole range of tools, including PKB’s contribution – a patient-controlled record. Johnny is highly experienced in the tech and medical field. He is not only a clinically active Interventionalist Radiologist & Nuclear Physician but also an international medical entrepreneur with a successful startup, Global Diagnostics (founded in 2001 with the inspiration on providing point of care mobile Ultrasound services to remote Aboriginal Communities), already under his belt and a mentor to many entrepreneurs in this field. He also appears on the RTE One Doctor’s on Call show.
We are proud to announce that we will be partnering with Ireland’s Jinga Life, founded by Johnny. Jinga (“the Female Warrior”) is a much better name than our own fCMO and Jinga Life has a big vision and lots of features immediately useful to families. It’s a pleasure to work with them.
Its creators, HealthFounders, are building a new healthcare ecosystem where patients take more ownership of their well-being. Our partnership will help build “Jinga Life” a home-based personalised Family Electronic Health Record and integrated 30 second Video Messaging Tool (Jinga Snap) aimed at engaging, empowering and enabling the Female Warrior (…the Jinga!) at the centre of Her Family’s Healthcare Team.
The video messaging tool is particularly interesting as supported from parents using PKB at GOSH who stress the importance of sending secure messages at night when your child is ill. Even if the answer is not instant, knowing that the clinical team looking after your child has received the message is a small weight off your shoulders, allowing you and your family to carry on looking after the child rather than that worrying about how to get help. Jinga’s video messages take this to a whole new level of help.
For more information, please visit http://healthfounders.com.
More health information means better care, right? NHS England has set up a programme to build a complete picture of what’s happening across all health networks. (you can read details on the care.data website).
While the intention is great, the approach is questionable. Dr. Mohammad Al-Ubaydli, CEO of PKB, asks
The question that the care.data effort brings to light is a simple one – why has the NHS moved so quickly to provide patient medical records to third parties and so slowly to provide data to the patient themselves?
The reality is that
the consent process for opting out of care.data is neither clear nor transparent. The questions page states that the record will not contain information that can identify a patient – and it’s true that NHS number, postcode, full name etc will be removed. However, it’s also true that each patient’s record will be linked to a “meaningless pseudonym that bears no relationship to their ‘real world’ identity”.
In short, this means that if you knew the date and place of a famous footballer’s foot injury, there would only be a few records that showed such an event. Once you have this information, the pseudonym provides the rest of their notes – not so anonymous now. We know this is not a theoretical risk because a Harvard University researcher demonstrated last year that she was able to retrieve 35 patients’ records at $50 per patient from Washington State’s research database.
It is worth reading the paper in the last link, it was not included in the Guardian’s final article.
PKB eliminates this situation. No one at PKB can access let alone sell patients’ data because of our patient-controlled encryption.
The full article (and many comments) are posted on the Guardian here.