Can I please see Mum's file and records?

Simple question needing a simple answer, yes? Well, actually no. At least, not when it comes to aged care.

Many people are apparently confused - including aged care providers, residents and their family members, about their respective rights to withhold and to have access to information which may have been accumulated about a particular person while that person has been in a residential care facility.

This short article attempts to provide all sides with some of the necessary information with which to make informed decisions about disclosure of information in records kept about aged care residents.

First, let’s be clear about the law which applies to this area. The sources of law are to be found in the Aged Care Act 1997 and the Privacy Act 1998 and in the various State and Territory laws which apply to medical record keeping. I shall just confine this discussion to the Commonwealth laws. 

There are better rights to access available under the laws of New South Wales, Victoria, and the ACT.

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Name of law
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Right to access records
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Representative's right to access

Privacy Act 1988 and the
N
ational Privacy Principles (NPP)

Commonwealth law:
- applies to all health
service providers

National Privacy Principle (NPP) 6:

Consumers have a general right of access to their own health records.

Access can only be denied in certain circumstances - for instance, where access can pose a serious risk to a person's life or health.

Limited - see below

Aged Care Act 1997

Commonwealth law:
- applies to all aged care
facilities which are funded
by the Commonwealth

Sect 62.1 Aged Care Act - personal information …must not be disclosed to any other person…except with the written consent of the person…

Nil unless the written consent (or direction) of the resident is submitted to the Residential Care Facility (RCF)

In addition, the Privacy Commissioner has released a Public Interest Determination (PID) in relation to the NPP 10, which deals with collection of information.

“PIDs 10 and 10A clarify that third party health information can also be collected from ''a person responsible' for an individual where the individual lacks the capacity to provide that informational themselves. The expression ''responsible person' has the same meaning as in the Privacy Act...”

In NPP 2, the circumstances under which information is disclosed (as opposed to collected) are stated. However, the Privacy Commissioner takes the view that -

Subclause 2.1 (which contains the defined circumstances for disclosure) does not override any existing legal obligations not to disclose personal information. Nothing in subclause 2.1 requires an organisation to disclose personal information; an organisation is always entitled not to disclose personal information in the absence of a legal obligation to disclose it. (more information)

The NPP goes on to state that a health service provider may disclose health information to a person who is responsible for the individual, if:

(a) the individual:

(i) is physically or legally incapable of giving consent to the disclosure; or

(ii) physically cannot communicate consent to the disclosure; and

(b) a natural person (the carer) providing the health service for the organisation is satisfied that either:

(i) the disclosure is necessary to provide appropriate care or treatment of the individual; or

(ii) the disclosure is made for compassionate reasons; and

(c) the disclosure is not contrary to any wish:

(i) expressed by the individual before the individual became unable to give or communicate consent; and

(ii) of which the carer is aware, or of which the carer could reasonably be expected to be aware; and

(d) the disclosure is limited to the extent reasonable and necessary for a purpose mentioned in paragraph (b).

A person is responsible for an individual, according to the Privacy Act, if the person is:

(a) a parent of the individual; or

(b) a child or sibling of the individual and at least 18 years old; or

(c) a spouse or de facto spouse of the individual; or

(d) a relative of the individual, at least 18 years old and a member of the individual's household; or

(e) a guardian of the individual; or

(f) exercising an enduring power of attorney granted by the individual that is exercisable in relation to decisions about the individual's health; or

(g) a person who has an intimate personal relationship with the individual; or

(h) a person nominated by the individual to be contacted in case of emergency.

The problem which these sections present becomes important, where the Residential Care Facility (RCF) may have its own concerns about the way in which care has been provided in the particular case, and the family, carer or person responsible may also be worried that something has happened to affect the health and wellbeing of the person concerned which has not been fully discussed or disclosed. In the absence of a request for health records by the person themselves (for example if they lack capacity to make the request), there may indeed be a problem, which their carer or near relative will need to confront, if they wish to see the records.

In such a case, as will be seen from the information given above, there needs to be a legal obligation in order to be sure that the RCF will provide all necessary information to the carer, relative, guardian or attorney.

IMPORTANT: The only way to be sure that the information will be forthcoming at the time it is needed, is to have the requirement inserted into the RCF Residential Care Agreement at the time it is made. This is so, under both the Privacy Act and the Aged Care Act.

Here is yet another example of important inclusions in the residential care agreement which are almost never discussed or addressed and which need to be made at the time of entry into care. The alternative is to rely upon the goodwill of the RCF and to hope that the need to see the records (in circumstances where there is real doubt about poor care and attention) does not arise.

Glossary

  • RCF - Residential Care Facility
  • NPP - National Privacy Principle
  • PID - Public Interest Determination

Useful links:


 
Posted on  Saturday, 16 February 2013 07:56
by  Heather
I would just like to share this so everyone can have a good laugh! I signed an excursion consent and indemnity form on behalf of a family member. I asked for a copy of it and provider refused. Unbelievable could not get a copy of a document that I signed. They made some stupid excuse that they cannot give out private information of a resident to someone else. I said to them I filled out the form and has my signature on that form. Anyway had to get the advocacy involved to get access to this document that I signed. I did get the document but had to sign a request to access information form and had on it wish to access info of a resident held by the facility. It is the most bizarre issue I had to deal with. Imagine that not been able to have a copy of a document that I filled in and signed!
Posted on  Tuesday, 05 July 2011 22:04
by  Barbara
I am studying my 4th certificate in Aged Care. I am up to Law and Ethics. I came across this site and I have taken some notes for my studies. This is all very interesting a lot of things I didn't even think about but reading on. it is all good Thankyou Barbara
Posted on  Friday, 01 April 2011 14:33
by  Sim
What a find! I am involved in a continuing battle with a home to access and receive information regarding my father's condition. In the past two weeks I have received every obstruction imaginable to obtain this information with the latest being an internal policy. The difficulty is that my father and I live in different states and the home now has an internal policy for not issuing information in the form of emails. Faced with days of reviewing legislations, acts, etc I started my research and came across your website. Whilst I continue to remain optimistic that I will access this information without a legal battle, I thank you for the wealth of information that has saved me many hours of reading.
Posted on  Monday, 22 March 2010 23:09
by  Rodney Lewis
Every once in a while the work we do is adorned with real gratitude. This is one of those times. It provides the energy which keeps us going and to try harder.
Posted on  Monday, 22 March 2010 19:44
by  M.N.
Excellent article. Words cannot adequately express my gratitude and reassurance that your entity exists and I cannot commend your efforts and professionalism more highly. My husband has fallen very badly 'through the cracks in the system' and I too, feel a destroyed a person, as a consequence of our experiences.
Posted on  Friday, 09 October 2009 00:00
by  Admin

Thanks for the article. You are correct about better access in Victoria for example, as I obtained a copy of the records for my Mum under the Victorian Health Records Act 2002, after much stalling from the provider concerned (a chain with homes in Victoria and Queensland).

As a last gasp attempt they quoted an exorbitant amount for the copy, however I ponted out that the costs associated with provision of a copy was also covered by the legislation, and my rights as next of kin were enforceable per the legislation. I got the copy.

 

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