Ethics

Ethics and ethical principles frame how you will work with patients.

Your overarching responsibility is to protect the rights and dignity of your patients at all times. This includes making sure patients understand what the work you are doing is about, why you are doing it, and that they have a choice to participate.

Be clear that if patients choose not to participate, their decision will not affect their routine care and treatment in any way.

If patients agree to participate, check back frequently that the patient remains comfortable with their choice.

It is important to remember that when we are working with patients as healthcare providers we are in the position of power. Not only is this because we are providing services to them, but current patients are also unwell. During your co-design work, patients will be receiving news about their medical conditions and receiving treatment. Following ethical principles protects patients from any harm that your work may cause.

Patient autonomy is often reduced in health care facilities due to disease, fear, family conflict, and economic or managed care concerns, along with complex medical decisions. What is often routine for the care provider, is unusual and often stressful for the patient and family. Medications with sedative effects, pain, and the foreign nature of the medical language further reduce the amount of patient autonomy.

(Meyers, 2004 quoted in Heiskell, 2010)

1. Before you begin

Check whether the work you are doing needs to be reviewed by an ethics committee.
As a general rule the quality and service improvement tools used in this guide should not require an ethical review. However, it is important that before beginning any work with patients you check the guidelines published by the National Ethics Advisory Committee.

2. Register your work

Where a process is available in your District Health Board or organisation, register your project so that it can be reviewed locally.

3. Agree on the key ethical principles you will use in your co-design work

Use these principles as a prompt when you are undertaking your work

National Ethics Advisory Committee
www.neac.health.govt.nz
Ethical Guidelines for Observational Studies
Observational Research, Audit and Related Activity, Dec 2006.

Example: Principles of good practice

In 2007 the National Health Service (NHS) Institute for Innovation and Improvement issued an ethical statement for staff undertaking experience-based design work. It included seven principles of good practice:

The improvement initiative should be designed and undertaken in a way that ensures its integrity and quality.
All people who are involved, including staff, patients and carers, must be informed fully about the purpose, methods and intended possible uses of any information they provide.
All participants must formally consent to the use of any information they provide, including attribution of quotations, film extracts etc.
All people involved participate on a strictly voluntary basis, free from any coercion and able to withdraw at any time without need for explanation.
All people involved must not be knowingly exposed to harm or distress.
Provision must be made for responding to queries and complaints about the work.
Privacy and confidentially must be respected as requested.

(Ethical Considerations for Experience Based Design: 2007)
www.institute.nhs.uk

Example: Knowledge Centre

Some larger health organisations provide support for staff undertaking research.

An example of this is Waitemata DHB's Knowledge Centre. The centre provides advice for those who plan to undertake research and audit projects that involve Waitemata DHB staff, patients or facilities.

Staff are required to register all research and audit work. In return guidance is offered on project design, biostatistics, budgeting, ethics approval, contracts, funding, and more. The centre also supports research through its annual health excellence awards.