More about the BPE research project

We commenced our 2 year research project focused on one form of prostate disease – Benign Prostatic Enlargement (BPE) – in August 2025.

Join our research and take part in our survey

Purpose of the research:  Prostate Scotland is a Scottish Charity (SC037494) which supports men with prostate cancer and prostate disease.  Prostate Scotland is carrying out a 2-year BPE research project to increase our understanding of what it is like for men living with BPE in Scotland.  The research project aims to gather data for:

  • Numbers of men diagnosed with BPE and for men living with catheters because of BPE;
  • Average waiting times to see specialist doctors and have specialist treatments like surgery;
  • The specialist treatments and services for men available across Scotland;
  • The impact BPE has on men’s lives.

Research findings will be used to develop policy and service initiatives for men with BPE that Prostate Scotland can put in place and that we can recommend to Scottish Government, the NHS and other organisations.

Who is being asked to take part:  Men, and those born biologically male, with a diagnosis of Benign Prostatic Enlargement (BPE) – which can also be called Benign Prostatic Hyperplasia (BPH) – and who live in Scotland can take part.

Voluntary participation:  Taking part in the project is entirely voluntary – you do not have to take part.  If you do decide to take part, you can change your mind and you will be able to withdraw at any time, without having to tell us why.

What does taking part involve:  We want to hear from men about living with BPE.  There are different ways men can tell us about their experience, and you can choose how you want to take part.  We will circulate a survey, undertake individual interviews, arrange focus groups and we also want to collect case studies from men.  We will ask questions about your experience getting a diagnosis and treatment, the effect having BPE has on your day-to-day life, and if it affects your friends and family.  We will also ask about any support services you have found helpful or would find helpful.  Taking part will involve completing a one-off survey, or participating in an interview, focus group or providing a case study.  The total time commitment of participating will be between 20 mins (survey) to a couple of hours (interviews/focus groups/case studies).

Confidentiality:  The survey will be anonymous and men who take part in interviews and focus groups will be anonymised.  Men who provide case studies will be anonymised unless explicitly agreed.

Join our research and take part in our survey

Data collection, storage and use:  Data collected from men who take part in the BPE research project will be processed and stored by Prostate Scotland in line with GDPR regulations and our privacy notice.  We will only gather data which is necessary for the research project, and some information about you (e.g. age, ethnicity) to make sure we are speaking to a wide range of men.  Your identifiable data will be held securely for a maximum duration of 24 months, after which it will be deleted.

Men who take part in interviews, focus groups and case studies will be audio recorded.  These recordings will be held securely, and recordings will be transcribed by the Patient Research Co-ordinator.  These recordings will also be held for a duration of 24 months and then deleted.  Surveys will be available online through a secure survey platform.  Paper copies will be available for those who prefer to complete a paper survey.  Paper copies of the survey will be uploaded to the secure survey platform and then shredded.

The lawful basis for Prostate Scotland processing your data for the BPE research project falls under the Legitimate Interest Article 6 (1) (f) and Explicit Consent Article 9 (2) (a) – Special Category Data (Health) of GDPR regulations.  In plain terms, this means we have a legitimate reason to use your data for this research, and we will ask for your explicit consent because your health information is involved.

You can withdraw at any time.  However, once your data has been anonymised or our findings published, we will no longer be able to identify and remove your individual contribution.  If you want to withdraw your data, you can contact us to let us know.  You can contact Sarah Henning (Patient Research Co-ordinator, Prostate Scotland) or Samantha Robertson (Head of Operations and Data Controller, Prostate Scotland).

We may use what you tell us in the survey, interviews, focus groups and case studies in our reports and publications (e.g. we may use an anonymised quote in a report), in policy documents and recommendations we make, at events to tell people about our findings or in the press.  If you agree to provide a case study (anonymised or named) we may use this in reports, publications, events and policy documents, with your agreement.

What are the possible disadvantages to taking part:  We want to hear about how BPE affects men and this involves asking about your health.  We know this can be a personal and sensitive issue, and you may find this distressing.  You can choose not to answer questions you are uncomfortable with and can stop at any time.

What are the possible advantages to taking part: Taking part offers you the chance to tell us about your experience and how you think care and support could be improved.  By doing so you could help make the situation in Scotland better for men with BPE.

Who is funding the BPE research project: The project is being funded by the Grand Lodge of Scotland.  Their funding covers the expenditure of the research, but unfortunately the funding is not sufficient to allow participants to receive any financial remuneration for taking part.

Who can I contact if I have questions: You can contact the Patient Research Co-ordinator (Sarah Henning), or the Head of Operations and Data Controller (Samantha Robertson) at Prostate Scotland to ask questions about the BPE research project by email to: research@prostatescotland.org.uk, by writing to us at: Prostate Scotland, 89-91 Morrison Street, Edinburgh, EH3 8BU or by phoning us on: 0131 603 8660.

Thank you for taking the time to read this participant information and for considering taking part in Prostate Scotland’s BPE research project.

Prostate Scotland is grateful to the Grand Lodge of Scotland for funding the BPE research project.