We are updating the Patients Know Best (PKB) advanced consent questions to make them easier for patients to understand and more scalable for organisations to roll out. The improvements are based on our work with early-adopter customers and patient charities. We will be rolling out the changes this month (May). If you have any questions or objections, please contact us.
Consent in Patients Know Best
The PKB platform has two levels of consent. As part of the basic consent level, privacy labels for each team define which of the four parts of the record a team can see in the patient’s record. A patient might grant a GP clinical team access to all four categories – general, sexual, mental and social care, while they might only allow a physiotherapy team to see the general health part of the record.
The advanced consent questions are optional for each team to ask a patient. Consent asks a patient how they would like to be contacted by the team, whether the team can contact the patient about research, and whether the team can keep storing biological samples from the patient. This change applies to these questions.
31% of patients already consent to be contacted about research when they first complete registration in PKB. The consent applies to teams who have configured PKB to ask the patient this question.
Why the changes?
PKB rolled out these privacy labels and advanced consent in 2015. Over the years we have received feedback from different researchers – from university hospitals to patient charities – asking to improve the clarity of the consent process.
We also wanted to expand the scalability of consent. When a professional directly asks a patient, the consent rate is 92%, so university hospitals want to start using PKB to store research consent collected from across all care settings. The consent is transparent to the patient and they can update their preferences over time.
We followed these principles when rewriting the consent questions:
- The sentences must be short and simple
- The consents must not mention the organisations the team is working with because the organisations and their names will change over time requiring changing consent unnecessarily
- Organisations using this consent to contact the patient (e.g. Discover) must cite the consent they used to contact patients and the time of contact (e.g. On “1 January 2020, you consented for Imperial College Healthcare NHS Trust to contact you about research. ‘Discover’ is conducting research with Imperial College Healthcare NHS Trust patients.”)
- The consents are on a team-by-team basis. Teams can turn on advanced consents if they and their patients have different needs and can obtain different consents.
The original and new text is shown below.
Advanced consent question 1: contact preferences
Communicating with you:
Many patients prefer to be contacted via email as it is quicker and can be read on the move via mobile phones and tablets. This also saves cost on paper and post. We use an email system to protect your information. A missed appointment costs the NHS on average £170. Many services also offer appointment reminders by text. Many patients find this is a useful way to be reminded of their hospital appointment.
Please contact me by: (multi tick box)
[ ] SMS
[ ] Post
Please contact me by: [ ] Email [ ] SMS [ ] Post
TEAM_NAME at ORG_NAME wants to know how to contact you. You can choose more than one option.
Allowing email saves cost on paper and postage, is better for the environment, and faster for you.
Allowing SMS means appointment reminders to prevent missing appointments. A missed appointment costs on average £170.
Advanced consent question 2: contacting for research
Contacting you in the future:
We may need to contact you in the future to advise you about new treatments for your condition or to recall you for a further clinical review. We may also contact you to invite you to take part in research studies, service evaluation and patient surveys in the interest of improving the healthcare you and the population receive.
[ ] I consent to be contacted in the future regarding health service improvements and taking part in research, service evaluation, and patient surveys.
[ ] Yes I want to be invited to take part in research, service evaluation, and surveys
TEAM_NAME at ORG_NAME can contact you to advise you about new treatments for your condition or to recall you for a further clinical review. We can also invite you to take part in research studies, service evaluation and patient surveys in the interest of improving healthcare for you and others.
Advanced consent question 3: storing samples
Storage and use of your clinical samples:
We would like to collect, store and use your clinical samples for the purpose of providing you and the population with improved healthcare. This may include research and genetic research by Imperial College Academic Health Sciences Partnership and their associated partners worldwide. The purpose being to develop improved treatment and management in the future. Such research will require a further independent approval process. You may withdraw your consent at any point and any remaining tissue that we have collected from you for research will be destroyed. If you do this a long time after giving consent, some of your material may have already been used in research.
[ ] I consent to the storage and use of my clinical samples to support approved research to improve healthcare
[ ] I agree to the use of my clinical samples for research
TEAM_NAME at ORG_NAME would like to collect, store and use your clinical samples to improve healthcare for you and others.
The research may be by ORG_NAME and their associated partners worldwide. Such research will require a further independent approval process.
You may withdraw your consent at any point. Any tissue we have from you for research will be destroyed at that point.
For more information or guidance on how to use advanced consent with your patients, please contact your Success Lead or email us firstname.lastname@example.org.