Patient-controlled medical records are great useful for research. In a 2014 survey, 92% of patients said they would share their PKB records with research teams.
There are two approaches to use PKB for research purposes. First, clinical teams which have access to a patient's record can provide extracts to researchers if their information governance team approves that no explicit consent is needed from patients. Examples for this include audits of the clinical service to asses patient care. The patient does not need to do anything.
The second approach is to explicitly consent the patient to link their record to the research team.
Explicit consent to access data for research
There are three ways to do this:
The patient can explicitly click to link their record to the research team through the registration page of the research team. For example, this is the page for the AKU Society: https://my.patientsknowbest.com/registerPatientStart.action?icode=akusociety
2. Clicking on "Log in" or "Register" links the patient's record with the Alkaptonuria Society with the research consent model the Society had set up with the patient.
3. An existing non-research team with consent to use the patient's record consents the patient to share data with the research. The Non-research team then adds the research team to the patient's PKB record using PKB's web site without the patient having to do anything. The patient and carer are notified by e-mail that this happened.
4. An existing non-research team with consent to use the patient's record consents the patient to share data with the research. The Non-research team's computer system then adds the research team to the patient's PKB record using the PKB API without the patient having to do anything. The patient and carer are notified by e-mail that this happened.
For as long as the research team has access to a patient's record they can see the data using the PKB web site and they can copy the data using the PKB API.
Managing sharing with research teams
At any time the patient, carer and professionals can see which teams have access to the patient's record. At any time the patient – or the carer or professional on behalf of the patient – can stop sharing with any team.
Advice for research and evaluation of PKB
When teams start using PKB with their patients amazing thing happen. PKB wants to help you capture the impact you have when you start using PKB with your patients, so you can demonstrate to your patients, yourselves and your managers the good work you are doing. For this reason, PKB recommends you think about some of the following ways of collecting data to describe the impact your team is having on the experience and outcomes of your patients and the effectiveness of the service you provide.
We suggest you think along the themes of adoption and usage of the technology, some clinical and operational benefits you have created, and the financial impact of these benefits. These themes are outlined below with examples of the type of data you can easily collect to quickly and simply demonstrate the impact of the work you do.
We have lots of experience in helping teams describe the impact of their work with PKB. If you would like a chance to discuss this with us in more detail, please contact us and we will be very happy to assist you.
Adoption and usage
Adoption of technology by both patients and professionals help improve the digital maturity of your service and organisation. This can lead to transformations in the effectiveness and impact of the care you deliver.
PKB records created, registered for and active (patient and professional)
Participation rate (accounts offered to patients/ team professionals: accounts registered for)
Network effect (non team users, carer users (when available)
Clinical and operational benefits
Both patients and professionals will have experience of the impact using this technology has made to health and the service provided. It is important to capture these experiences and objective evidence of clinical and operational perceived benefits.
Clinical quality benefits
Clinical effectiveness benefits
Impact on burden of disease
Impact on self management
Improvement in the patient-provider relationship
Patient engagement & activation
Clinical quality themes:
Reduction in medical errors/ improvement in safety/ avoidance of harm
Accessing different services/ meeting national guidelines
Improved control of disease
Clinical effectiveness themes:
Reduction in unplanned and urgent admissions
Reduction in unnecessary appointments (routine follow ups, waiting times)
Reduction in unnecessary costs (less paper being used and mail costs)
Improvement in productivity (less wasted time, unnecessary appointments, test results communication, right information at the right time)
Baseline and post PKB deployment data collection for all metrics
Financial impact & value for money
Financial impact can be described in terms of cost savings. Value for money describes the greater value that is delivered through an improvement in the productivity, safety, quality and effectiveness of care as a result of the digital transformation when patient controlled electronic health records are used.
Financial impact (savings)
Reduction in A&E attendances
Reduction in admissions
Reduction in GP contacts (telephone/ face to face)
Reduction in DNAs
Reduction in unnecessary tests & procedures
Reduction in costs (going paperless)
Value for money
Reduction in medical errors
Better quality care (% cases meeting national guidelines)
Improved control of disease (% cases meeting national guidelines)
Improved patient engagement & activation
User surveys, for example "How many unplanned GP contacts have you had in the last 30 days?"
Process and cost mapping pre and post “paperless”
Literature on cost savings generated on themes in ‘value for money’ metrics
More details about research and evaluation healthcare teams have done on their use of PKB can be seen in the case studies on our website and details are included in our Effectiveness and Impact Paper.