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Privacy notice


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In brief

When you post your story on Care Opinion, we publish it on this site if we can.

Then we share it with people in many different organisations working to make health and care services better.

We don't share your personal details, like your email address or postcode, with anyone else, unless there is a serious risk of harm to you or others.

You can withdraw your story from this site at any time. If we have already shared it with other people, they may have kept a copy.

Our privacy notice explains who we are, what information we collect from you, and what we do with the information.

Who we are

We are Care Opinion CIC, a non-profit social enterprise. You can find us here:

53 Mowbray Street, Sheffield S3 8EN

Telephone: 0114 281 6256


Our data protection officer is Sarah Ashurst.

Care Opinion is a registered data controller (ICO registration ZA499495).

Why we collect information from you

Care Opinion’s mission is to provide an online platform so that people can share honest feedback easily and without fear, stories are directed to wherever they can help make a difference, and everyone can see how and where services are listening and changing in response.

We do this in a way which allows many people to read and learn from your feedback, but at the same time protects your privacy.

The lawful basis for our data processing is your consent. We only collect feedback from you if you agree to share it with us for this purpose. You can withdraw your consent for us to share your feedback at any time.

We do not use the information you share with us to make any decisions about you or create any automated profile or score about you.

Information we collect from you

When you share your story on Care Opinion we ask for information about your story, and about you.

Here is a list of the information we collect from you, and why.

Your story: we collect your story so we can publish it on our website. We hope this will help people in many places learn from your experience, whether it was good or bad.

The health/care services you used: we collect the services you used so that we can let staff in those services know about your story. Staff may post a response to your story.

What you felt was good or could be improved, and how you felt: we collect this to help summarise your story, and also to make it easier for people to find your story on Care Opinion.

Your email address: we collect your email address so we can communicate with you about your story. For example, we will email you to let you know when your story is published, when you receive a response, or when your story leads to a change.

Your postcode: we collect your postcode so that we can direct your feedback to the health/care organisations which are responsible for making sure there is safe and good quality care in your area. For example, in England this would include clinical commissioning groups, and in Scotland it would include health and social care partnerships.

Your age group: we collect your age group (adult, young person, child) to help us understand who is using our service.

Your IP address: we collect your computer’s IP address to help us prevent or detect possible abuse of our web site.

After you share your story, you can also give us extra information about yourself if you want to. You don’t have to give us this information.

The extra information is:

  • Your gender
  • The year you were born
  • Your ethnic group
  • Whether you are limited by a health condition

This information helps us to understand more about how different groups of people use Care Opinion. The questions we ask are the same questions used by NHS England in the “NHS friends and family test”.

As you use Care Opinion, if you are logged in we collect other information about how you use the site:

Stories you have looked at: we collect this to provide you with your recent reading history.

Stories you have marked as “similar experiences”: we collect this to help us show which experiences are most common.

Responses you post to your story: we collect responses to help people resolve issues and communicate effectively with the services they used.

Who can see the information you share with us?

Because the purpose of Care Opinion is to direct stories to wherever they can help make a difference, after we moderate your story we make it public and share it as widely as we can.

But, to protect your privacy, we don’t share information about who you are.

Information we make public

  • Your story
  • The health/care services you used
  • What you felt was good or could be improved, and how you felt
  • Your age group
  • Your responses

We share this information with everyone.

Sometimes we may share your story with the service providers it is about before we publish it on Care Opinion.

Information we keep private

  • Your email address
  • Your postcode
  • Your IP address
  • Stories you have read
  • Stories you have marked as similar experiences

We don’t share this information with anyone.

But if we believe that there is an immediate risk of serious harm or loss of life to you, or to someone else, we may share your private information with the health/care service caring for you, or with the police.

Information we share only as statistics

If you give us extra personal information (decade of birth, gender, ethnicity, long-term illness), we do not share this about you as an individual.

We do provide reports to health/care organisations which include this information as statistics. For example, our reports might say “50% of people using Care Opinion are over 55 years old”. Our reports never include your individual personal information, and we never show your individual personal information with your story.

How do we share the information we make public?

After we publish your story (along with the services it is about), we share it in different ways so that it can be read and used by many people.

Some of the ways we might share your story are:

  • We publish it on our website for anyone to read
  • We send emails to staff who need to see it
  • We post a link to your story on social media such as Facebook and Twitter
  • We include your story in reports for health/care organisations
  • We share your story with health/care organisations and researchers via our data feed (API)
  • We share your story with health/care students training to become professionals
  • If your story is about an NHS service in England, we will also send it to the NHS Choices website.

Because your story is online, like any web page it will be seen by search engines like Google. This means people can search for your story.

In line with our mission we share your story as widely as we can, without sharing your private information, because we want your story to make a difference.

How long we keep your information for

Because people can learn from your story even many years after you shared it, we keep the information you share with us indefinitely.

If we have to make changes to your story before we can publish it, we keep the original version you sent us for 6 months after publication, and then we delete it.

Your rights in relation to your information

We hold your information only with your consent. You can withdraw your consent to sharing some or all of your information at any time.

You have the right to be informed

This privacy notice provides information about who we are, the information we collect, what we do with it, and who can see it.

When we ask you for information we provide a summary privacy notice and a link to this longer privacy notice.

You have the right of access

You can see the information you have shared with us by logging into Care Opinion using your email address and password.

You have the right to correct your information

When you log into Care Opinion you can correct any personal information you have shared with us.

You have the right to a copy of your data

When you log into Care Opinion, you can request a download of all the stories and responses you have shared with us.

You have the right to withdraw your story

You can withdraw any story you have shared with us, whether we have published it or not. You need to log into Care Opinion to do this. Please note that if you withdraw a story, we will not re-publish it.

You have the right to remove all your information

You can ask us to delete all the information you have shared with us. If you do this we will delete your Care Opinion account, all your stories and responses, and any other information we hold.

Please note that once your information is deleted, we cannot get it back.

If your stories and responses have already been published, they may have been read and saved by many different people. It is not possible to delete copies of your story or responses which have been saved by other people on their own computers.

You have the right to complain

If you have any concerns about how we hold and share the information you have given us, please let us know. If you are unhappy with our actions, you can complain to us.