Patients Know Best partners with Thalidomide Trust

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.

Patients Know Best partners with Thalidomide Trust

Wednesday 9th May 2012

doctor, handheld computer

Patients Know Best (PKB), the world’s first patient-controlled electronic medical records system, has partnered with The Thalidomide Trust to deliver a radical new ‘e-health platform’ to assist Thalidomide Trust beneficiaries across the world to manage their health and wellbeing.

Based on Patient Know Best’s unique system – which also enables fully secure communication – The Thalidomide Trust’s new e-health platform has the potential to record and capture the often complex nature of a Thalidomide medical history and makes it far simpler for attending clinicians to quickly understand the inter-related nature of a patient’s health problems – with the potential to improve diagnosis and treatment.

The e-health platform underwent thorough approval testing by the Trust’s technical advisory group for several months before launch.

Alan Summerside, support programme director at The Thalidomide Trust said: “We conducted research in 2006 which found that the overall health of our members was deteriorating fast.

“Many were living with increasingly high levels of ‘co-morbidity’ – multiple and often inter-related health problems. We knew we had to find a way to help members help themselves and we knew we had to help GPs and other clinicians to understand and better diagnose conditions and manage care – which can often be complex and specific to Thalidomide patients.

“Through using Patients Know Best as the platform for our new e-health platform integrated alongside Instant Medical History which takes detailed and personalised medical histories, we now have an all-embracing system which we believe will enable users to receive better treatment and improve both their health and wellbeing.

“We also have a system that we can adapt in the future and one which gives us the flexibility to add new features for users over time.”

Patients Know Best has the potential to integrate fully into existing medical records systems, including those within the NHS secure network.

The Patients Know Best-based system gives thalidomide patients control of their own medical records and an online health ‘journal’ which ensures that doctors who are invited to share the records can track health and wellbeing over time.

PKB also enables patients to contact their doctors through a secure messaging system with the option to use Skype and ensures that an individual’s different specialist clinical teams can have a shared view of their medical history.

Additionally, PKB has been tailored to provide an online library of frequently occurring Thalidomide health related conditions and an Instant Medical History facility giving clinicians and GPs a snapshot of a patient’s overall health. The platform also gives access to a virtual health clinic, run by specialists at The Thalidomide Trust, which helps patients find the right combination of therapeutic, clinical and social care.

Dr Mohammad Al-Ubaydli, founder and CEO of Patients Know Best said: “Our work with The Thalidomide Trust is a great example of what can happen if you give patients back control of their own medical records.

“Thalidomide patients often have complex, inter-related healthcare needs – often too complex for a GP to get to grips with adequately in a ten minute consultation and often too inter-related for any single specialist clinician to tackle either.

“Through providing clinicians with more relevant and detailed information about a patient’s medical history, we hope this new platform will help thalidomide patients help themselves to better health and better lives.”

Patients Know Best


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