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Part of A guide to confidentiality in health and social care: references

Section 8: Carers, family members and friends

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Those involved in the direct care of a patient/service user should establish with them what information they wish to be shared, with whom, and in what circumstances. This will be particularly important if the patient has fluctuating or diminished capacity or is likely to lose capacity, even temporarily. Early discussions of this nature can help to avoid disclosures to which patients would object. They can also help to avoid misunderstandings with, or causing offence to, anyone with whom the patient/service user would want information to be shared.

Some friends and/or family have a special relationship with the patient/service user in that they act as a carer. Confidential information should be shared with the carer, when the patient/service user has given explicit, informed consent. In circumstances where the patient/service user can not give valid consent, confidential information should be shared with the carer subject to open dialogue with the patient if possible. If it is no possible to engage with open dialogue, information should be shared with the carer in the incapacitated person's best interests, when ALL the following criteria are met
 

  • the patient/service user lacks capacity
  • the carer 'cares for' the patient/service user
  • there is no legal documentation in place to prevent sharing
  • there are no contra-indications to sharing in the patient's/service users' record and
  • there are no safeguarding issues apparent

Hearing the concerns of and gaining information from third parties

If anyone close to the patient/service user wants to discuss their concerns about the patient’s/service user’s health, health and care staff should make it clear to them that, while it is not a breach of confidentiality to listen to their concerns, they cannot guarantee that they will not tell the patient/service user about the conversation. Health and care staff might need to share with a patient/service user information they have received from others, for example, if it has influenced their assessment and treatment of the patient/service user. Health and care staff should not refuse to listen to a patient’s/service user’s partner, carers or others on the basis of confidentiality as the information they provide might be helpful in the health or care staff’s care of the patient. At the same time staff will need to be alert to bias, malice or simple misconceptions.

There are occasions when a third party, such as a family member, offers information to a registered and regulated professional who is part of an individual’s care team when the patient/service user is absent. The professional should explain to the third party that either at the time or sometime in the future the patient/service user may be able to identify the source of the information even if the identity of the third party is withheld. This should be undertaken BEFORE the third party has disclosed the information they wish to share. This means the third party has the following options
 

  • the third party consents to the patient/service user finding out their identity
  • The third party wants the information recorded and understands there is a residual risk of them being identified as the source of the information even if it is not readily identified to the patient/service user by patient online access
  • the third party decides NOT to tell the professional the things they were planning to (this is only possible if the information about the patient/service user has not already been disclosed)

Sharing genetic or similar information with family members

Genetic and some other information about the patient might also be information about others with whom the patient shares genetic or other links. The diagnosis of an illness in the patient might, for example, point to the certainty or likelihood of the same illness in a blood relative.

Most patients will readily share information about their own health with their children and other relatives, particularly if they are advised that it might help those relatives to

  • get prophylaxis or other preventative treatments or interventions
  • make use of increased surveillance or other investigations, or
  • prepare for potential health problems

However, a patient might refuse to consent to the disclosure of information that would benefit others, for example where family relationships have broken down, or if their natural children have been adopted. In these circumstances, disclosure might still be justified in the public interest. If a patient refuses consent to disclosure, health and care staff will need to balance their duty to make the care of the patient their first concern against their duty to help protect the other person from serious harm. If practicable, health and care staff should not disclose the patient’s identity in contacting and advising others of the risks they face.

The information governance principles for providing direct care for patients with genetic conditions are exactly the same as the direct care of any patients. However, there is a particular challenge with regard to the creation of a legitimate relationship between a geneticist and a family member. This often involves complex practices, including consent forms, which do not arise in other areas of health and social care.

Either of the following solutions are appropriate in creating a legitimate relationship

  • The geneticist gives the patient a letter of explanation for their family members on why they should seek the attention of a geneticist either directly or through their general practitioner which the patient then shares with his or her family members.
  • Genetic and some other information about the patient might also be information about others with whom the patient shares genetic or other links. The diagnosis of an illness in the patient might, for example, point to the certainty or likelihood of the same illness in a blood relative.

In some rare cases the patient’s consent may be overruled if disclosure of data is sufficiently in the public interest, i.e. not disclosing data will result in someone suffering significant harm.

 

Last edited: 17 January 2022 12:52 pm

Previous Chapter

Section 7

Next Chapter

Section 9

Chapters

  1. A guide to confidentiality in health and social care: references
  2. Section 1: The information governance review
  3. Section 2: The common law of confidentiality and consent
  4. Section 3: The Data Protection Act 1998
  5. Section 4: Human Rights Act provisions
  6. Section 5: Professional regulators’ guidance
  7. Section 6: Record-keeping best practice
  8. Section 7: Sharing information for direct care
  9. Section 8: Carers, family members and friends
  10. Section 9: Safeguarding
  11. Section 10: Using health and social care information –direct care and indirect care purposes
  12. Section 11: Privacy Impact Assessments
  13. Section 12: Anonymisation guidance
  14. Section 13: Accredited Safe Havens
  15. Section 14: Data sharing contracts and agreements
  16. Section 15: The Health and Social Care Information Centre’s powers under the Health and Social Care Act 2012
  17. Section 16: Legislation that controls confidential information disclosures
  18. Section 17: Information security management
  19. Section 18: Objections to sharing
  20. List of key documents
  21. Glossary