Patients Know Best (PKB), the world’s only fully patient controlled medical records system is today collaborating with Oxford University’s George Institute for Global Health on a research trial studying how home monitoring tools can support heart failure patients. Continue reading
When we started PKB we deliberately chose a simple consent process for patients. Either the patient trusted someone with their full medical record, or they trusted them with none of the record. Patients trusted a small number of people with their full record and this was clear for everyone to understand.
Over the last year we have been working with medical professionals and with patient groups to test out a more sophisticated privacy model. The new model splits the record into general health, mental health, sexual health, and social care. We wanted it to allow more choice but maintain ease of use. You will see these changes in August, and these will also mean changes to the consent process. Continue reading
In August, you will see lots of new features for managing the privacy settings of your medical record. We have spent the last year testing these out with medical professionals and with patient groups and you will see the results in the next few weeks.
From August, each data point in your record will have one of four privacy labels: general health, sexual health, mental health and social care. For example a glucose result for diabetes may be ‘general health’ while a Chlamydia test may be under ‘sexual health’.
The author of each data point will decide the privacy label at the time of entering the data point. For example, a diabetes team sending a glucose test result may file it under ‘general health’ but if the test result came from a sexual health team they may give it a ‘sexual health’ label so as to hide their activity and protect your privacy. For a more technical description of how IT departments and software developers can do this see our developer documentation on privacy labels. Continue reading
We are pleased to announce that we are working with the National Cancer Registration Service (NCRS) and Cancer Research UK to provide all PKB patients access to the national cancer registry by end of 2015.
Started in 2013, Cancer Research UK, NCRS and braintrust (a brain tumor support charity) began offering a small pilot of brain cancer patients access to their treatment records through a patient portal. In 2014, the study expanded to other cancer types. Today, 11 clinical teams across England offer patients the ability to look at details of their hospital visits such as tumor reports and treatments as well as give them the means to improve the accuracy and quality of their medical data. In 2015, the study is looking to make the national cancer registry data available to any cancer patient in England.
That is why PKB is partnering with them to provide our patients access to NCRS data so that:
they can see and understand all the information about their health. We also know from previous research that 92 per cent of our patients want to make their data available to researchers so we expect that they will want to contribute additional data to the NCRS registry – further advancing cancer research. – Dr. Mohammad Al-Ubaydli, CEO of PKB
We’ve made significant changes to the PKB lab results page (Health > Laboratory) because we believe the new layout is better for patient safety. Instead of only displaying the latest test result without showing the date of when it was taken, we are now displaying an overview of test results. This overview is beneficial for two reasons. Continue reading
The B Corporation has one clear aim; to use the power of business to solve social and environmental problems. This is a movement that began in the US where, by law, companies must put profitability ahead of any other facet of their business, including mitigating adverse effects on society and the environment. The B Corp movement allowed companies to declare that they want social and environmental responsibility to be just as paramount as their bottom line. As the movement prepares to launch in the UK, PKB has joined the cause at the leading edge, becoming a Founding UK B Corp.
As we are going through our application I can see how this is the perfect time for PKB to be taking on this initiative and working toward accreditation.The B Corp Impact Assessment is thorough, taking note of our environmental impact, pay structures and transparency as well as our contributions to wider society and innovation. As the PKB team starts to grow with new staff and new deployments, I know that the B Corp best practices and accreditation will help us to maintain the feeling of being one inter-connected team. B Corp will put in place practices that will help PKB to scale whilst continuing to support its workforce, in order to continue the hands-on and personalised service PKB has delivered from it’s inception.
By becoming a B Corp, PKB will be recognised amongst other socially conscious companies such as Ben & Jerry’s and Patagonia, and already when we tell our partners we are pursuing B Corp certification, they recognise what this accreditation represents and the processes and practices that must be in place in order to achieve this. Right now we are busy writing a “to do list” of actions for the coming year influenced by the Impact Assessment; the first aim is to receive our B Corp Certification and to stand up at the September B Corp UK launch event and encourage other companies to follow suit.
Our CEO Mohammad was recently interviewed as part of the B Corp UK promotions, and here you can listen to him explain what joining B Corp UK means to him
- 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 on the link above to read more about our data storage 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 on this link to be taken directly to the policy.