Freedom of Information - FOI

 

The following information is about Freedom of Information from Citizens Information 

Freedom of Information to access your Medical Information

Your medical records are your personal records.

You have an individual right of access to your personal records held by the Freedom of Information Act 2014 (FOI Act).

Public bodies the FOI Act applies to include:

• The Health Service Executive (HSE)
• Voluntary hospitals
• Some health agencies
• GP records

You can check this list of public bodies covered by FOI.

If you are a medical card holder, you can use FOI to get medical records from records held by your GP.

You cannot use FOI for medical records from a private hospital or from your GP if you visit them as a private patient. Some public bodies are exempt from Freedom of Information.

How to access my medical records using Freedom of Information

If you want to access records under the FOI Act, you should apply to the public body that holds them.

If you have a medical card, the HSE holds the records of medical card holders.

If the head of the public body believes that giving you the information may be harmful to your health or emotional well-being, they can instead give the medical records to a health professional that you choose.

If you have a dispute about access to records under the FOI Act, you should contact the Office of the Information Commissioner.

How to access somebody else’s medical records

You can use FOI to access the medical information of:

• Your child if you are the parent or guardian
• An adult you care for if they are unable to exercise their rights

The head of the public body will only grant access to the records if they consider it is in the best interests of your child or person you care for.

Can I access a person's medical records after they die?

You can access the medical records of a person who is dead if you are:

• The personal representative administering the estate of the person who died
• Performing some legal function related to the person who died or their estate
• Their spouse (this includes a divorced spouse or cohabitee), next of kin or another person that the head of the public body considers appropriate

Accessing Medical Information in Court

You may access medical records for court cases if there is a court order of discovery. The court may order a hospital or doctor to disclose or discover documents or medical records to a plaintiff's advisers if those documents are relevant to the court case.

Further Information

You can read the health workers' ethical duty with regard to confidentiality in the Medical Council guidelines Guide to Professional Conduct and Ethics for Registered Medical Practitioners.

Health Service Executive National Information Line

Opening Hours: Monday to Friday, 8am-8pm, Saturday and Sunday, 9am-5pm

Tel: (041) 685 0300

Locall: 1800 700 700

Homepage: https://www2.hse.ie/services/contact-the-hse/

The following information is from an Irish Government page Freedom of Information Ireland (foi.gov.ie)

What is Freedom of Information?
The Freedom of Information Act 2014 gives you the right to access records held by FOI bodies. FOI bodies must give you an explanation if you are not given what you asked for and the decision must normally be made within 4 weeks.

What can I ask for?
You can ask for any of the following.

• Any records relating to you personally, whenever created

• All other records created after the effective date

What is a record?

1. Determining whether it holds the information requested;
2. Locating the information or documents containing the information
3. Retrieving such information or documents
4.  Extracting the information from the files, documents, electronic or other information sources containing both it and other material not relevant to the request, and
5. Preparing a schedule specifying the records for consideration for release.

In relation to the search, retrieval and copying charges there is a minimum threshold of €101 below which no search, retrieval and copying charges can be charged. Once the charge reaches the €101 full fees apply.  There is a cap on the amount that can be charged and this is set at €500.  These is also a further upper ceiling limit on estimated search, retrieval and copying fees set at €700 above which a body can refuse to process a request unless the requester is prepared to refine the request below the limit.

• specify that the request is being made under the FOI Act

• be clear enough so that the public body to whom the request is addressed understands what records are being requested. In cases where the public body is not clear what records are being requested, it must assist the requester to put his/her request in such a way that the records being sought can be identified.

• When you are seeking information which is personal, you will be required to supply the appropriate identification as required by the decision maker.

• In cases where you are seeking to access records relating to a deceased person under section 37(8), you will be required to provide additional details in order to exercise  these rights.

Click on this link for further information on completing an FOI application form.
You may be able to obtain the information you require by other means such as:

• By having a discussion with a staff member of the public body

• By looking at information leaflets, annual reports, etc. which the public body publishes

• By ‘administrative access’, i.e. by writing or emailing  the appropriate Officer of the public body stating the information/record that you are requesting.

A record includes a book or other written or printed material which is in any form including in any electronic device. It is a map, plan or drawing, a disc, tape or film which contains visual or non-visual images or a copy of any of these.

Do I have to pay for getting information under FOI?

When the request is for personal information there are no charges unless there is a significant number of records.

In the case of requests which relate to non-personal information there are charges are applied for search retrieval and copying. The relevant section of the Act here is Section 27(2) and these fees relate to:

There are also fees which apply for an internal review under Section 22, this is €30 and €10 for medical card holders and their dependants. The fee for appeals to the Office of the Information Commissioner is €50 and €15 for medical card holders and their dependants

Can I appeal a decision?

Yes. If you are not satisfied with the decision made you can seek an internal review of the decision which is a complete and new review of your request by someone more senior. If following this you are still not satisfied you can appeal this decision to the Office of the Information Commissioner.

WHAT BODIES ARE COVERED BY FOI?

Under the Freedom of Information Act 2014, all bodies that conform to the definition in Section 6(1) of the Act are subject to FOI, unless they are specifically exempt, in whole or in part, either in Section 42 or in Schedule 1 of the Act. The definition is as follows:

6. (1) Subject to this section, each of the following shall be a public body for the purposes of this Act:

(a) a Department of State;

(b) an entity established by or under any enactment (other than the Companies Acts);

(c) any other entity established (other than under the Companies Acts) or appointed by the Government or a Minister of the Government, including an entity established (other than under the Companies Acts) by a Minister of the Government under any scheme;

(d) a company (within the meaning of the Companies Acts) a majority of the shares in which are held by or on behalf of a Minister of the Government;

(e) a subsidiary (within the meaning of the Companies Acts) of a company to which paragraph (d) relates;

(f) an entity (other than a subsidiary to which paragraph (e) relates) that is directly or indirectly controlled by an entity to which paragraph (b), (c), (d) or (e) relates;

(g) a higher education institution in receipt of public funding;

(h) notwithstanding the repeal of the Act of 1997 by section 5 , and subject to this Act, any entity that was a public body (including bodies or elements of bodies prescribed as such) within the meaning of the Act of 1997 on the enactment of this Act.

The types of bodies that are subject to FOI under the Act, in whole or in part, are as follows:

Governments Departments and agencies under the remit of Government Departments, such as Bord Iascaigh Mhara under the Department of Agriculture, Food and the Marine, the Higher Education Authority under the Department of Education and Skills and the Environmental Protection Agency under the Department of the Environment, Community and Local Government

An Garda Siochana

Local Authorities

Education and Training Boards

Health Service Executive

Voluntary Hospitals

Universities and other higher education institutions

Regulators, such as the Commission for Energy Regulation, the Commission for Communications Regulation

National Treasury Management Authority and its subsidiary bodies

Central Bank of Ireland

Refugee and asylum seekers bodies, such as the Office of the Refugee Applications Commissioner and the Refugee Appeals Board;

Commercial State Companies operating in a monopoly market, such as Irish Water, Irish Rail and the energy network functions of ESB, EirGrid and Ervia.

HOW DO I MAKE AN FOI REQUEST?

Request must be in writing to the FOI Body that holds the records. Requests can also be made by email.

For example: If you want records about a policy matter at the Department of Housing, Planning & Local Government, you must apply to that Department or if you want access to your medical records, you must apply to the appropriate regional FOI Officer in the HSE.

When you make a request you must:

Submit the request in writing to the FOI Body that holds the records you are looking for.

Each Public Body has one or more FOI Officers whose responsibility it is to handle requests made under the Freedom of Information Act 2014.

If you want to access records held by a public body you must apply directly to that public body.

For example:  If you want records about a policy matter at the Department of Housing, Planning & Local Government, you must apply to that Department or if you want access to your medical records, you must apply to the appropriate regional FOI Officer in the HSE.

Is it always necessary to make a FOI request to get information from public bodies?

Before you submit your Freedom of Information request check the Public Bodies Publication Scheme on their website to see if the information is readily available.

CAN A PERSON GET ACCESS TO THEIR RECORDS FROM A GENERAL PRACTITIONER (GP)?

If the person is a private patient but is a medical card holder then they can apply to the HSE for those records. This is the case as GPs treat such patients under a contract for services with the Health Service Executive (HSE).

Note: A person can apply through the Data Protection Act, to any organisation including a GP for their personal information.

CAN A PARENT OR GUARDIAN HAVE ACCESS TO THEIR CHILD’S MEDICAL RECORDS?

Normally a parent or guardian can have access to their child’s medical records however, it all depends on the circumstances at the time of the request. Each FOI request should be looked at on its own merits, the records should be considered, the circumstances which are surrounding the records at the point in time when the request is made along with any other relevant factors.

Public Bodies should consider Section 35 and Section 37 along with any other exemptions that may be relevant. Public Bodies should refer to the CPU Guidance Notes in relation to this. In all circumstances the decision makers should have due regard for the best interests of the person to whom the information relates.

The Act sets no age at which a person is held to be capable of understanding the FOI process, making an application or participating in the consultation process. However, under section 37(8) of the Act the Minister for Finance made Regulation S.I. No. 387 of 2009 allowing for access by parents or guardians to the personal information of:

• minors; or

• persons with a mental condition, incapacity or severe physical disability which means that they are incapable of exercising their rights under the Act.

I’M NOT HAPPY WITH A DECISION ON MY REQUEST – WHAT CAN I DO?

Requesters can appeal to the FOI body to re-examine their case.

The FOI body must have the request reviewed by someone more senior than the person who made the original decision. The reviewer can change or agree with the original decision.

If the requester is still unhappy with the decision, he or she has the right to appeal the decision to the Information Commissioner.

The Commissioner has been appointed specifically to hear appeals from members of the public who are not happy with decisions made on their requests. The appeal may be subject to an up-front fee.

Disclaimer: The information in this post is for general information purposes only. While we endeavour to keep the information up to date and correct, we make no representations or warranties of any kind, express or implied, about the completeness, accuracy, reliability, suitability or availability with respect to the post or the information, products, services, etc contained in the post for any purpose. Any reliance you place on such information is therefore strictly at your own risk.The suitability of any solution is totally dependent on the individual. It is strongly recommended to seek professional advice and assistance. 
 

ME Advocates Ireland (MEAI)'s Position on Label (name) and Diagnostic Criteria (case definition)

Label

 

ME Advocates Ireland (MEAI) advocate for the adoption and use of the Myalgic Encephalomyelitis (ME) label. We do not recognize CFS as per Fukuda, ME/CFS as per the Canadian Consensus Criteria (CCC), or SEID (NAM) as an accurate diagnosis for ME and believe that the quagmire of the above mentioned criteria and other various criteria available worldwide has led to confusion, lack of healthcare and treatment, and lack of sufficient research on ME, however

• we acknowledge that people with ME or CFS in Ireland have been diagnosed with either the ME or CFS label or both, i.e. ME/CFS;

• we acknowledge that others in Ireland and elsewhere use the CFS and ME/CFS labels and we do not wish to withhold support from those who have been given a diagnosis of CFS, or ME/CFS;

• we appreciate that the CFS label is used to refer to ME in general in other countries but are unsure if those that are diagnosed with CFS are actually receiving appropriate treatment;

• we recognise that the CFS or ME/CFS label is used throughout international research but again are not sure what patients are being identified for research purposes and on what criteria their diagnosis is based;

• we acknowledge that conflated labels such as ME/CFS and CFS/ME are used by others though we do not use them, or advocate for their usage;

• we recognise that the CFS/ME label is mostly used by the psych cabal and associates who have caused so many issues around ME for decades;

• we recognise that it is critical that there is more biomedical research to further investigate and validate our understanding of ME and to increase knowledge of the different sub-groups of ME.

Diagnostic Criteria

ME Advocates Ireland (MEAI) believe that case definitions for clinical practice should

 

• be research based,

 

• validated and manageable to provide a tool which can relieve patient's uncertainty,

 

• indicate the most appropriate treatment and prevent adverse effects and waste of healthcare resources of unnecessary treatment and diagnostic procedures,

 

• be founded on available knowledge regarding the mechanisms of the actual condition,

 

• be validated through credible and transparent processes and presented in a format which can be implemented in everyday practice.

 

In the absence of HSE ME Guidelines it is our opinion that the International Consensus Criteria (ICC) and Primer (ICP) are the best current case definition and guidelines currently available.

ME Advocates Ireland (MEAI) advocate for the adoption and use of the International Consensus Critera (ICC) 2011 along with the follow up document, the International Consensus Primer (ICP) 2012 for diagnosis, testing, treatment and management suggestions. We think the ICC and the ICP are the best tools to assess and manage ME. More about these below.

 

International Consensus Criteria (ICC) 2011

The International Consensus Criteria (ICC) which insisted that CFS should not be considered a diagnostic entity and that ME is a specific diagnosis requiring thorough patient history, examination, and testing.

Many worldwide experts on Myalgic Encephalomyelitis (ME), including Ireland’s Prof Austin Darragh (RIP) came together and produced comprehensive diagnostic criteria called the International Consensus Criteria (ICC) (2011).

The International Consensus Criteria (ME-ICC) advocates for removing fatigue as a characteristic symptom and defines the disorder as an acquired neurological disease with complex global dysfunctions.

The ME-ICC was developed for both clinical and research use and includes considerations for diagnosing children and adolescents.

The ICC defines specific symptom requirements:

• post-exertional neuroimmune exhaustion (PENE),
• neurological impairments (which encompass neurocognitive impairments; pain; sleep disturbance; and neurosensory, perceptual, and motor disturbances);
• immune,
• gastrointestinal and genitourinary impairments,
• energy metabolism impairments.

It is important to note that the 6/4/3-month waiting time for diagnosis as per other case definitions is dropped in the ICC, i.e. there is no minimum time and ME can be diagnosed immediately, a very important thing when we consider that delay in diagnosis prevents relevant management and symptom treatments which inevitably leads to a decline in health with worsening of illness.  

The ICC includes operational notes for each of the symptom criteria.

Myalgic Encephalomyelitis International Consensus Criteria

International Consensus Primer 2012

In 2012, the ICC authors provided a condensed version to offer as physician's guidelines, i.e., the International Consensus Primer (ICP)

The ICP states:  "Myalgic encephalomyelitis, a name that originated in the 1950s, is the most accurate and appropriate name because it reflects the underlying multi-system pathophysiology of the disease. Our panel strongly recommends that only the name ‘myalgic encephalomyelitis’ be used to identify patients meeting the International Consensus Criteria (ICC) because a distinctive disease entity should have one name."

The ICP approach makes sure no patient is seen as too challenging to accurately assess.

The ICP was written to provide clinicians a one-stop, user-friendly reference for ME. It includes a concise summary of current pathophysiological findings upon which the ICC are based. A comprehensive clinical assessment and diagnostic worksheet enables clear and consistent diagnosis of adult and paediatric patients world-wide.

The treatment and management guidelines offer a blueprint for a personalized, holistic approach to patient care, and include non-pharmaceutical and pharmaceutical suggestions. Patient self-help strategies provide recommendations for energy conservation, diet, and more.

Educational considerations for children are included.

The ICP specifically targets primary care clinicians, as well as specialists in internal medicine. Other medical care practitioners may find it helpful.

The ICP stems from wide international research and hundreds of thousands of hours of clinical investigations, all relevant to ME.

Myalgic Encephalomyelitis - Adult & Paediatric International Consensus Primer for Medical Practitioners

HSE Position

We have repeatedly asked that the HSE adopt and use these criteria and guidelines, or at the very least provide links to make them easily available on the HSE website.

We have also asked the chief clinical officer (CCO) to provide a statement to attest to the appropriateness and relevance for their adoption and use until such a time that we have our own HSE ME clinical guidelines.

Currently the Chief Clinical Officer is supporting the development of a HSE Clinical Guideline for ME and a Clinical Guideline Development Group was established in 2022. 

 

Here is the HSE's Letter re the new guideline group.

Further Reading

The Case Definition Quagmire Surrounding ME Remains an Urgent Challenge

Disclaimer: The information in this post is for general information purposes only. While we endeavour to keep the information up to date and correct, we make no representations or warranties of any kind, express or implied, about the completeness, accuracy, reliability, suitability or availability with respect to the post or the information, products, services, etc contained in the post for any purpose. Any reliance you place on such information is therefore strictly at your own risk. The suitability of any solution is totally dependent on the individual. It is strongly recommended to seek professional advice and assistance in some instances.