Consent to access data for research





Patient-controlled medical records are greatly used 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 that 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:

 

  1. 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 things 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 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 with the themes of adoption and usage of the technology, some clinical and operational benefits you have created, and the financial impact of these benefits. 

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 on research@patientsknowbest.com and we will be very happy to assist you.
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