Transparent, fair, effective – life saving

This is a customer case study. You can read more case studies on our web site.

Fair Medicine, a nonprofit Dutch organisation, and Gaucher experts at the academic hospital AMC in Amsterdam teamed up with PKB in 2015 to develop an open model for drug evaluation by building a registry for patients with Gaucher’s Disease, a rare genetic condition. Through PKB medical records, patients and their healthcare professionals evaluate drugs and treatments.

Prof Büller, co-founder of Fair Medicine, tells us,

“If you listen carefully to patients they often know what is best for them. When you bring patients with the same disease together it’s fascinating to see what they find important – and it’s often not what the doctor thinks is important. As a doctor, Patients Know Best provides an opportunity for patients to tell us what’s important to them – not just the other way around. I truly believe that PKB could revolutionize the way we think about patient platforms.”

Fair Medicine is currently trialling the Gaucher patient-powered registry in the Netherlands across small groups of patients, but plans to roll out this registry across the EU.

Click to read the full case study and feel free to contact us if you want to know more.


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Team view maintains professionals’ access to their own team’s data

This month, we are rolling out a new feature that will allow team professionals to always be able to view medical data that their team had added on medical records. The data will be viewable even for patients who have been discharged or have stopped share their record with the team. This allows the team to ensure clinical safety and maintain medico-legal audit trail compliance without needing to make local back-ups.

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Patients Know Best works with North Manchester General Hospital to halve HIV patient clinic time

This is a customer case study. You can read more case studies on our web site.

The Regional Infectious Diseases Unit (RIDU) based at North Manchester General Hospital is one of the largest units of its kind anywhere in the UK and offers specialist clinical services to patients across Greater Manchester – and more widely.

Since 2014, the RIDU has been rolling out Patients Know Best (PKB) to its cohort of over 2000 HIV patients – a project led by HIV specialist clinician Dr Andrew Ustianowski and supported by Janssen, a pharmaceutical company of Johnson & Johnson.
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Patients Know Best works with Derriford Hospital, Plymouth to transform the care of HIV patients

This is a customer case study. You can read more case studies on our web site.

In 2014, Derriford Hospital in Plymouth became one of the first NHS hospital trusts in the UK to use Patients Know Best’s online patient controlled records system to manage the care of its entire cohort of HIV patients – through a pilot study supported by Janssen, a pharmaceutical company of Johnson & Johnson.

Spearheaded by sexual health and HIV consultant Dr Zoe Warwick, today the system is being actively used by well over 300 HIV patients across Plymouth and the South West of England. Continue reading

Pharma Times: Does the patient know best?

PKB’s Dr Lloyd Humphreys, vice president for business development talks to Pharma Times magazine about how the system is working across the world. A great write-up which includes the following: “The actual concept behind PKB is intuitive enough to make you wonder why there aren’t more platforms like it in the healthcare industry,” indeed so!

Do patients know best – Published in PharmaTimes magazine – July 2016

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Transparent, fair, effective – life saving

Fair Medicine works with Patients Know Best to develop the world’s first patient-powered registry for Gaucher’s Disease

Dutch not-for-profit organisation Fair Medicine was founded to shine a light upon – and improve – the complicated and often opaque process used to develop new pharmaceutical treatments. A system they believe doesn’t work well for the patient – or drug purchasers.

Since 2015, Fair Medicine has been working with Patients Know Best to develop a more open model for drug evaluation though building a registry for patients with Gaucher’s Disease – a rare genetic condition which severely impacts the independence of those who live with it. Continue reading

Delphi Medical case study: From dependence to freedom

The leading independent provider of substance misuse services in the UK, Delphi Medical first partnered with PKB in 2014 to give their patients control of their own medical records. Patient-controlled medical records have helped Delphi patients receive continuous and improved quality of care. Moreover, on an individual level, giving patients access to their medical records empowers them and provides them the ability to actively control their lives.  

Dr. John Richmond, co-founder of Delphi Medical, explains.

We want to get to the stage where we have a dialogue with our patients through Patients Know Best – that’s our ultimate aim. We want them to ask questions and interact with us because when that happens, that means they are taking an active role in their lives and are on the journey from dependence to freedom.

Delphi will be rolling out PKB to 200+ patients a year.

Read the case study for details on how Delphi Medical uses PKB and contact us if you have questions.

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