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.
Last week we rolled out Organisation Networks functionality. This allows organisations which trust each other’s governance to share decryption keys for looking after their local population. This is the world’s first patient-controlled health information exchange (and you can buy it on the G-Cloud NHS Framework). If you are a customer who wants to switch this on with surrounding organisations, please contact us.
How to use this
Networks automatically share decryption keys across all the organisations in the network. Each organisation then needs consent from the patient to access the data using the decryption key. PKB prompts the user to get explicit consent (e.g. with the patient in clinic); document implied consent (e.g. because the patient has been referred to the team); or ask for one-time break-the-glass access (e.g. because the patient is unconscious in an emergency).
PKB stores a copy of all private keys for all the customer’s patients in the customer’s institution-wide private key store. No matter which team creates the patient’s record, the private keys are stored by the institution, available to all teams. Each team must still get or document consent before they can access the data. This fits into an institution’s existing practices for data sharing between teams.
Any employee can document that they have the right to look at a patient’s record and proceed to look at the record. The audit trail and employment contracts allow the institution to follow up and punish abuse of these data access privileges and in the meantime clinical teams can quickly see data to provide safe care to the patient.
PKB customers in a network synchronise their private keys with all other institutions in the network. Each team must still get or document consent before they can access the data. This usually requires new processes and formal data sharing agreements between the institutions in the network. Each member institution of the network must reassure itself that that the other members of the network have the right processes to follow up and punish abuse of these data access privileges. This feature is critical for regions using PKB as a patient-controlled health information exchange. If you would like advice on the processes and assurances you need to set up a network please contact us.
Across the world, providers in a city, region or state are clustering together to deliver shared care. By sharing data about their shared patients these organisations improve safety, raise quality and lower costs.
Traditionally such health information exchanges have failed for a number of reasons (see below). PKB’s Organisation Networks functionality allows you to overcome these problems and deliver the full benefit of an HIE, today.
First, no traditional health information exchanges have had patients’ permission for data sharing. They lacked a consent engine, but nevertheless shared data in the interests of patient safety and care quality. Without patient permission there are always risks to patient privacy. There are also limits on scaling, with no mandate to go beyond GP and hospital, within a narrow geographical area. Continue reading
The day I met Dr Ron Hsu was a difficult one. I remember a room full of doctors criticising PKB. Here’s how Ron remembers it: Continue reading
The slides below are from a talk that Mohammad Al-Ubaydli gave earlier this month at UK’s eHealthWeek. We put them here because these slides show that, while healthcare solutions may include technologies like a patient portal or health information exchange, these are not the complete solution because they ignore the patient. These slides explain what the PKB solution is, how it fits with other technologies and the benefits of using personal health and care records.
Take a look and let us know if you have any questions.
Today I came across the Profit-with-purpose businesses: Subject paper of the Mission Alignment Working Group. This was written by the The Global Social Impact Investment Steering Group (GSG), which was established in August 2015 as the successor to the Social Impact Investment Taskforce, established by G8.
I was pleased to read that it featured Patients Know Best. PKB is certified as a B Corporation (part of the first group to be certified in the UK) and was previously recognised by Ashoka, the National Lottery and UnLtd as a social enterprise. UnLtd recognised and funded us as a social enterprise from our founding in 2008.
The report features PKB in the beginning as part of exploring profit-with-purpose businesses as a new sector:
To take an example, Patients Know Best (PKB) is a health informatics start-up which puts health data in the hands of the patients rather than selling it on, and which brings together all the data from different clinics and social care agencies to improve the lives of people with complex conditions. By not selling patients’ data, PKB restricts its revenue potential compared with its competitors, but it is confident that this commitment is socially valuable in protecting patients’ interests. PKB is the kind of venture than needs to move fast if it is not to be outrun by purely commercial competitors with no commitment to putting patients first. As a high-risk digital start-up, only equity investment can provide realistic risk-adjusted returns to investors. To offer equity, it needs a pro t-distributing legal structure – and to offer trust to its clients and investors, it needs to show it is fully committed to its social model. PKB is now a multiple award-winning growth venture, and an exemplar of the kind of pro t-with- purpose business which this report is all about. For more information on the way PKB embeds its social mission through its contracts, see Annex C.
Case Study 7 has more details
We are celebrating the announcement that Dr. Mohammad Al-Ubaydli, CEO of PKB, has been named 2016 Health Tech & You Champion! It’s a proud moment for us and we are excited to be recognized as a group that has most championed the uptake and adoption of health tech.
We are adding growth charts for children this month because they are an important tool for healthcare professionals to make an accurate clinical impression of the child’s growth. This is one of the features for looking after children’s records.
For patients up to 18 years of age, PKB plots the patient’s key measurement on growth charts. By comparing to typical children’s growth rates using data from UK WHO growth charts, clinicians will use this feature to determine whether a child is growing appropriately. The growth charts will automatically appear at the top of the measurement page.
For patients 24 months and younger, the charts scale in months. For patients 2-18 years, the charts will scale in years.
At the moment the growth chart measurements are showing height and weight. More growth charts will be coming soon.
Contact us if you have any questions.