"My EyeSite" - Tech/App User Survey
Do you have an inherited retinal eye disease?
If yes to above, please indicate your diagnosis:
Leber congenital amaurosis
If 'other', please state your inherited retinal disease diagnosis here:
Do you have any other chronic eye disease (s), which affect your vision?
What are your other eye diagnoses (if you have any)?
Age-related macular degeneration
Diabetic eye disease
Uveitis or other eye inflammation
Dry eyes or blepharitis
Would you like to have a more active role in managing your eye problem?
How would you rate your level of sight impairment?
Excellent vision (no sight impairment)
Poor vision (severely sight impaired)
Are you able to access to the internet at home or elsewhere (via a desktop computer, laptop or Smartphone)?
Do you own a Smartphone ( a mobile phone that connects with the internet)?
No, but I am interested in getting one.
No, I am NOT interested in Smartphones.
No, I used to have a Smartphone, but I don't anymore.
If you have a Smartphone, do you download and use apps?
Have you ever made a "subject access request" for your NHS hospital data? For example, have you previously requested copies of your hospital notes, for your own use or to pass onto a third party.
I don't understand what a "subject access request" is
If yes to above, how easy did you find the subject access request process?
Why did you make the subject access request?
Did the subject access request for your data meet the purpose you intended?
Would you be interested in a personalised app which would allow you to easily store your own hospital data, and share it with people of your choosing?
If you answered yes to above, who would manage/ use the app (please indicate all options that apply)?
My partner or spouse
My son or daughter
Another family member
A professional carer
Somebody else (not listed above)
What kind of eye data would you be interested in storing in your personal app or web account (please indicate all options that apply) ?
Medical/ eye diagnoses
Clinical eye images e.g. retinal photos or OCT scans
Genetic information/ data relating to eye disease
Blood test results
Timeline of my hospital visits and outcomes
Medical management plans
Doctors I have seen
Other data (not listed above)
Who might you choose to share your hospital eye data with (please indicate all options that apply)?
My consultant ophthalmologist (eye doctor)
Another consultant ophthalmologist e.g. for a second opinion
Another hospital specialist (not an ophthalmologist)
My optometrist or optician
My family and/or friends
A private healthcare company
Anybody who might be interested in it
Do you have any concerns about storing your data in an app or web platform, or concerns about sharing your healthcare/ eye data?
If yes, to above, what are your concerns (please indicate all that apply)?
Whether the data would be useful to me
Problems that I might have in accessing or using the app/ webpage
The time it would take to upload/download data to the app/ website
Data security/ unauthorised access of my data by third parties
Third party sharing of my data for unethical purposes
Please further describe any specific concerns:
Asian/ Asian British
Black/ African/ Caribbean/ Black British
Mixed/ Multiple Ethnic
What is your age?
Under 12 years old
12-17 years old
18-24 years old
25-34 years old
35-44 years old
45-54 years old
55-64 years old
65-74 years old
75 years or older
What is the highest level of education that you have completed?
Further education/ non-university college qualification
Trade/ technical/ vocational qualification
Undergraduate university degree
Postgraduate university degree
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