Introduction
As young people move through healthcare transition, from the ages of 11 to 25, they will increasingly become responsible for finding, sharing and keeping information about themselves, their health, their medical needs and their treatment. This heightened role means that staying safe online also becomes increasingly important.
Young people will have medical records with their primary care doctor (General Practitioner or GP). As a minimum, these records will include information about childhood vaccinations received as well as any childhood interactions.
Anyone with a long-term condition will have records of any test results, prescription medication and allergies. If the young person has had healthcare in hospital, they will have a separate hospital medical record with relevant information and if they have received care in several hospitals, although the records may not be joined up, the GP will have these records
These are complex issues and practice changes frequently. We have offered an overview of the key points; if something does not make sense to you, please speak to a member of your healthcare team or check the NHS Digital links.
Although much of this module is addressed to young people, we are also addressing you if you are a parent/carer, a teacher, social worker or friend.
What we'll be covering
We’ll be looking at the following topics:
- What does health information mean?
- Do I have to share my information (family, friends, unsharing)?
- Who gets to see my healthcare information?
- Can my information be hacked?
- Why do I need to have access to my healthcare information?
- How old do I need to be?
- What about young people who may lack capacity to make decisions?
- Where do I find good information about health
- Safety online
- Are there Apps and Stuff that can help my health?
We will also:
What does health information mean?
Health and care information includes different types of care:
- Medical and general health information
- Mental health information
- Sexual and reproductive health information
- Social care information
All of this information is confidential and personal to the patient. There are strict laws and rules about confidentiality and how data and information is kept secure. For the NHS, data security is overseen by Caldicott Guardians.
A Caldicott Guardian is a senior person responsible for protecting the confidentiality of people’s health and care information and making sure it is used properly.
All NHS organisations and local authorities which provide social services must have a Caldicott Guardian.
UKGC
The UK Caldicott Guardian Council
Health and care information is kept in different forms.
- Paper records and letters:
Paper medical records have been gradually replaced by electronic patient records, although they may still be in use in some areas. Paper is also still in use for letters which are sent to patients or parents/carers with information about appointments, results and clinic appointments. In some areas, clinic letters are sent electronically as well. Unfortunately, paper can go missing…
- Electronic patient records and letters:
As in many other countries, the NHS has introduced electronic patient records. There are several different systems, for example different systems used in General Practice (called TPP and EMIS) as well as different systems used in hospitals (such as EPIC or Cerner).
Electronic patient records offer many advantages; although these different systems can, but may not always, talk to each other.
- Patient and Caregiver access to electronic records – Patient Portals
Patient access to parts of their electronic records is now possible. This is helpful to overcome the disadvantages of paper letters, which can be delayed or lost in the post, and allows patients to access their health records at any time
Patient, or parent/carer access is managed through so-called patient portals.
The most well-known is the NHS Account, which allows patients to see information held about them by their General Practitioner. For general practice or hospital records, the portals are different depending on which system is used. For example, you may have heard of “MyCare”, “MyEpic”, “MyGOSH”, “Care Information Exchange” or “Patients Know Best”.
NHS Digital oversees the development of these.
Do I have to share my information?
Confidentiality
Your healthcare information is confidential.
What about sharing health information with family?
In general, the advice is to only share personal, private health information with those who really need to know.
As a young person:
Managing your own health information is something that you need to learn as you become more independent. This is one of the reasons why your parents or carers will be receiving routine clinic information. They are the people who are normally there to support you when you have health problems and are often an important safety net.
As you become more independent and able to make your own decisions, you can decide not to share your information. This depends on how independent you are, and what your relationship and level of trust is with your parents/carers. You can discuss this with someone in your healthcare team.
As a parent or guardian:
You play an important role in supporting your young person in learning to manage their health information as and when they are able to do so. If and when your child is able to make the decision not to share their record with you anymore, it is important, that you respect their decision. The same right to confidentiality and respect also applies to you and your own health record.
What about sharing with friends?
Sharing information with your close friends about your medical condition can be very helpful. It can make you feel more supported and improve how you feel about life with your condition. Looking out for each other is something friends do well.
For example, if you have an emergency plan as part of your care, it can be useful to share a copy with friends, so that they can learn what to do if you need help. This could be personalised plans such as a food allergy action plan, or information on what to do if you are diabetic and your blood sugar drops, or what to do if you have a seizure.
Sharing some personal information about your condition is not the same as giving another person access to your health record. You wouldn’t give out photocopies of all your letters with all your private information to your friends but you might tell your friends that you have an allergy to peanuts. Sharing should be on a need-to-know basis and can be important in keeping you safe.
Take care before you share!
If you have access to your personal patient portals, i.e. you can see your electronic record, then you need to think very carefully about who you give access to this.
A person who has ‘proxy access’ (usually a parent or guardian) to your electronic patient portal will generally be able to see information from previous years, health appointment diaries, prescription records, test results etc. So think: do you really want to share this?
Control and coercion are not okay or a part of a healthy relationship.
Can I unshare?
Patient portals allow you to share and unshare.
As a young person – with time you grow more independent and you may not wish your parents or carers to see your record. It may be helpful to discuss this before ‘unsharing’
As a parent – it is important that you can accept the decision to unshare. You have the same rights for your care record.
As a healthcare professional – you need to know about patient portals, capacity and ability to give consent. Consent and decision-making changes for most young people as they get older, although young people with learning disability may and will need special consideration.
We’ll go on to look at how information is shared in healthcare.
Who gets to see my healthcare information?
The information in your personal healthcare record (electronic or paper) will only be looked at and updated by clinicians and members of the healthcare team, who are involved in your care.
Increasingly, electronic patient records are linked up to share important information, such as e.g. allergies, which medications a patient is prescribed, which vaccinations they have had.
The NHS does collect confidential information to improve healthcare. Some types of data sharing you can and cannot opt out of.
Information about healthcare – who sees it, who decides about sharing?
For ongoing medical and social care, when it is relevant, information is shared with the other clinical teams who you see. For example, for a person with asthma, allergies and epilepsy, the asthma doctor may share the clinic letter with the GP as well as the allergy doctor and the neurologist. You will know who the letter has been shared with by looking at the ‘cc – copy’ list of names at the end.
Information will not be shared with schools, workplaces or others unless you specifically ask for this or give permission for this to happen.
For children and young people aged under 16, letters and treatment plans are routinely sent to their parents or carers.
From age 16, letters about your care should be sent to you, rather than your parents or carers. You should be asked if you want them to receive copies and you can say if you don’t want them to receive copies.
Information about sensitive topics, such as mental health, sexual and reproductive health is treated differently and not shared like general medical information.
For example, if a young person, who is considered able to make their own decisions (i.e. has capacity and is competent to do so) attends a sexual health clinic and they do not wish their parent to know about this, then this information will not be shared.
Speaking to your clinical team about what you are happy to share with parents and what you do not wish to share is important. If you have reasons why you do not to want information on your healthcare record to be shared , then it is very important to speak to your clinician about this. It is rare, for this to happen and it often means, that something difficult might be going on in a person’s life.
There are rare circumstances, when your clinician would share information without your permission. This would happen if they are worried about your safety.
You can find out more about confidentiality and sensitive topics in the other 11to25hub modules.
Can my information be hacked?
NHS patient portals, such as the NHS Account, NHS health records and hospital patient portals are protected by strict procedures, which are explained on the NHS Digital website.
Why are e-mails are still necessary for some patient portals?
For some patient portals, for example Patients know best or the Care Information Exchange you need your own email address to sign up. This is because people may change their mobile phone numbers (quite often) and home address (sometimes especially young people) but usually keep their e-mail address. If you do change your email address, it’s important to update your information! Here you can find out more about one of the systems.
Why do I need to have access to my healthcare information?
Your health, your knowledge, your control
Learning how to manage your health information is a big step towards being independent and more in control. Being more independent and more in control will make it easier to live your life well.
Access includes, for example,
- appointment diaries, so you know when, with whom and where you have health appointments.
- Your clinic letters. If you travel and need to see a doctor, it’s helpful to have those; if you need to check something yourself, etc…
- Your treatment plans in a safe and accessible space
- You may be able to manage your repeat prescriptions and blood test results via your access
How old do I need to be?
Before the age of 13 years your parent or carer will be able to manage your information.
From the age of 13 you have a right to ask for access yourself: for example, from your NHS account.
In order to use your NHS account, you must be aged 13 years or older. If you are 13, 14 or 15 your GP will need to individually approve your access to many of the services, in accordance with any local policies, and you may not be able to access all services. If you have any questions you should contact your GP directly.
From the age of 16 years you should be managing your information yourself if you are capable of doing so.
From the age of 18 years, you are legally considered an adult and expected to do this yourself if you are capable of doing so.
If you are a young person with learning disabilities, you may need help and you can find more information here and in the next topic.
What about young people who may lack capacity to make decisions?
If the young person is not able to manage their information for themselves, then their parents or legal guardians can do this instead before their 16th birthday.
Parents need to be aware that, from the age of 18, the status of their child changes and they legally become an adult, regardless of their decision-making abilities or level of understanding. Parents/carers will need proof of legal guardianship to continue managing the young person’s health information and healthcare.
Your NHS Trust learning disability and autism team will be happy to make personalised information.
We hope to offer a future module on healthcare transition for young people with learning disability.
Where do I find good information about health?
Sadly, there is an enormous amount of misinformation, wrong information and potentially harmful information online. Your first port of call when looking for any information about a medical condition should be the NHS website, your hospital’s website or your GP’s website.
Safety online
Remember that your personal information and your healthcare information are confidential. Take care before you share!! For comprehensive guidance about staying safe online, please take a look at the NSPCC website, which has resources for young people, parents, carers and teaching staff.
Are there apps and stuff that can help my health?
There are many apps out there and not all are of good quality. Before you download anything related to healthcare, please talk to a member of your healthcare team. The NHS has retired its own app library, but now provides recommendations on how to find healthy apps.
Lived experience
Dangers and risks of medical misinformation
Summary
Hopefully you now:
- understand the different types of health information systems
- know about patient portals and feel able to discuss getting access with your clinical team
- recognise that personal and medical information is confidential and the motto “Take care before you share”
- know where to find more information about how to stay safe online.
If you want to know more...
There are plenty of ways to find out more. One great one is to use your NHS account to access services online on your computer, tablet or mobile phone.
Find more information on the 11to25hub
Why not dip into one of our other modules, where you can find out about other aspects of healthcare transition in more detail.
Bust the jargon!
Whether you’re a young person, a parent or a professional you’ll have realised that there’s a lot of jargon in the health and social care systems. This jargon buster from Think Local Act Personal may help. Just type in a term…
External resources
Here are some more resources that you may find helpful, engaging and informative:
- Finding health information online can be difficult. Not everything is trustworthy, accurate, reliable, or up to date. NHS Health Education England has a guide that gives you hints and tips about finding good information online
- MIND has a guide Understanding confidentiality – for 11-18 year olds that explains how and when information about your mental health is kept private.
- The NSPCC has a set of online safety guides that can help all play our part in Keeping children safe online
- The Patient website has guidance on How to find reliable health information online
- Health misinformation has become a global problem and so the World Health Organization has developed a Toolkit for tackling misinformation on noncommunicable disease.