Step 2.6 – Ensure ethics and privacy principles are followed
By completing Step 2.6, you will have a set of principles and actions to ensure you protect patients’ privacy and use their information ethically when collecting, analysing and reporting AHPEQS results.
Things to consider
This page lists the items that need to be considered in Step 2.6 to ensure ethics and privacy are followed.
Your methods of ensuring patients’ privacy and treating them and their information in an ethical manner may differ according to local requirements and operational processes. 'Ethical' conduct of the survey and treatment of data relies on good governance and is separate to formal ethics approvals processes which are required if you intend to publish in peer-reviewed journals. This Step examines aspects of ethical surveying whether or not you go through formal ethics application processes.
Initial approach to patients
It is good practice to give patients advance notice that they will later be given a survey about their experience. There are several options for this initial approach to patients, including:
- Giving written information on admission to enable informed consent to participate
- Advising as part of discharge paperwork that a survey will be coming
- Personal visit from a consumer liaison worker or volunteer to explain the survey
- Letter or email after discharge to forewarn of the survey’s arrival.
As part of this advance notice, and in order for consent to be informed, it is important that it is made clear to patients that:
- They can ask any questions they have before completing the survey
- Their responses are or are not anonymous; if not anonymous, who can access their information
- It is voluntary for them to participate in the survey
- Their responses will in no way influence the care or treatment they will receive in future
- They may be contacted to follow up on their responses, and in what circumstances that may happen
- The information they provide will contribute to improving quality, safety and other patients’ experiences
- Their information will be kept confidential, stored securely, and aggregated and de-identified for analysis.
Consent to participate
Patients should be given the opportunity to provide consent to participate in AHPEQS. This consent can be either explicit or implied:
- To give explicit consent, the patient must be given materials that explain AHPEQS and what is involved for the patient, or discuss AHPEQS with a staff member with a checklist of information, and sign a document expressing their understanding and willingness to participate
- To give implicit consent, the patient must still be provided with materials or talk about AHPEQS with a staff member; their response to the survey is then taken as ‘implied’ consent that they have agreed to participate.
You will need to consider how you will handle follow-up, especially where patients are interested in further dialogue with the hospital. Consider giving an opportunity within the survey for anyone who discloses harmful or unsafe practices to ask to be contacted (or to contact someone at the service). Also consider whether and how you will create a feedback loop to let the patient know how their feedback has resulted in change or to thank them for a compliment. This is easier when there is a free text question.