Welcome to Patients Know Best Special Edition*!

Important privacy policy updates
We've just made two important updates to our privacy policy. 

• Data storage: Because we're expanding globally with many data centers in multiple countries, we have updated the policy that clarifies how we comply with the security laws in different countries. Click here to read more about our data storage policy update.
• Children's medical records: While we maintain the principle that the patient, who is able to consent, controls the data and the sharing of the information, a child's record is different. The child is not the owner of his medical record but the parents may not be either. We have put in place a policy that allows for the child, at age 16, and his family physician or pediatric team to review and decide who should have access to the medical record. This can include the family physician or social care staff assigned to the child as part of a court order or carers that have parental responsibility. We updated this policy to reflect the feedback we got from our pediatricians. Click here to be taken directly to the update on children's medical record. 

Rare Genomics Institute amplifying hope
Whether it's finding new ways to engage global communities of patients in particular disease areas or providing better community healthcare, we at PKB are always astounded by the variety of projects our partners take forward, which utilize the strength of patient-controlled medical records. This month, we feature Rare Genomics Institute in their new initiative called Amplify Hope. This new study is aimed at determining how crowdfunding can promote scientific research to help rare disease patients.
From Jimmy Lin, MD, PhD, MHS, President of Rare Genomics Institute:
"I am excited to see how crowdfunding will not only help raise much needed funds to uncover the cause of a child's illness, but also how it can educate an entire community about this latest revolution in medicine."
If this is something you are interested or want to participate in, please click here to go to their site directly or email us at help@patientsknowbest.com for an introduction.

 

Welcome ABMU!
PKB is excited to welcome Abertawe Bro Morgannwg University Health Board (ABMU) and their Dermatology department at Singleton Hospital, Swansea to the PKB community. We are delighted to be working with the patient members at Skin Care Cymru - who have supported the scheme - and to announce our first dermatology department and our first site in Wales! Whilst we're at it, we added two more features: 
1. PKB is now available in Welsh. You can find it at the language bar at the bottom of each PKB page. 
2. We also made images easier to see in the PKB discussions pages. You can now click on the image attachment and a new browser window will appear with the image without having to download the attachment.
Click here for more. 


 

Introducing Mate!

Mate studied electronic engineering and robotics at Budapest University of Technology. During the last year of his MSc. he became part of a neurobiology research group at the ELTE University where he fell in love with HPC and parallel computing. Later he joined the world of finance in London, worked on high-performance event processing systems, various distributed systems and equity trading strategies. Before joining PKB he advised and consulted various, mostly healthcare-related early-stage German startups.

 

The judges unanimously handed PKB the overall 'Champion' prize of the event in recognition of its commitment to patient care and healthcare innovation.