Ethics and patient feedback

When it comes to gathering reliable patient feedback, there needs to be careful consideration on the method of collecting information, writes Professor Colin Thomson.
Healthcare organisations recurrently seek opinion from patients about their experiences of the services or the care they have received. Sometimes, this is sought in an informal and unstructured way and at other times in a systematic manner as part of quality assurance.
Health professionals have an established commitment to assessing care in order to maintain and improve its quality. Quality assurance activity often relies on retrospective review of the records of patient care for particular conditions or about particular services. It has less frequently sought direct opinion and comment from patients themselves about their experience.
The renewed emphasis on patient safety is likely to add a fresh emphasis on the importance of the patient’s experience of their treatment and care. Where this leads to a greater frequency in seeking direct feedback from patients following the experience, some ethical attention and care is warranted in designing, collecting and dealing with that feedback.
Characteristically, the emphasis in quality assurance activities has been to answer the questions that health care professionals want answered: what was the duration of care?, what were the adverse events?, what was the progress conditions from admission, during treatment and on discharge?, etc. Where this emphasis is used in seeking feedback from patients, the focus is on what the health professions want to know from their patients: the professionals determine the scope of the questions and the information collected. Ethically speaking, this is an expression of beneficence, or doing good, and non-maleficence, or avoiding harm, that has characterised health professional ethics for centuries.
It is quite a different focus to ask patients what they want to tell health professionals about patients’ experience of treatment and care. This focus is on what the patient thinks is worth reporting about their experience, whether in praise or criticism: it is the patients who determine the scope of the information provided. Ethically speaking, this is an expression of respect for patient autonomy as it accords to patients respect for their opinion and their interpretation of their experience.
There are hazards in adopting an approach to feedback that gives emphasis to patient autonomy. These are greatest where no criteria are set out for patient feedback.
Patients may feel free to express criticism of not only their care but of individual professionals and may reveal information about professional conduct that falls below acceptable standards. Where such open-ended feedback is sought, careful consideration needs to be given to how such disclosures will be treated and whether professionals involved in the care of those patients need to be informed both before the feedback is sought and of the nature and content of that feedback.
Different methods of information collection can be adopted to address these difficulties. Quantitative methods that typically involve surveys can control more effectively for adverse disclosure. However, they offer less opportunity to respect the opinions of patients and limit their responses to the focus of the survey instrument.
By contrast, qualitative measures that typically involve structured interviews or focus groups give greater scope for respecting patient autonomy. They can achieve some limits on adverse event reporting, for example, by establishing that known names or identifying information will be recorded or that pseudonyms will always be used for individual staff members.
Procedurally, seeking patient feedback and opinion in a systematic way can be categorised as a research activity that will need ethical review by a human research ethics committee. This need not be unduly burdensome where the project involves no more than low risk to any participant, as national standards permit a reduced level of review for these studies. Where the activity is classified as quality assurance and not research, the national standards do not require ethical review. However, some institutions use a light-touch review to ensure that the methodology is suitable and to address any editorial requirement where publication is sought of the outcome.
One final ethical consideration that is always relevant, even where patient feedback is informal and unsystematic, is feedback to patients on the information that they have provided. The obligation is a matter of justice or fairness – it is recognition of the contribution that patients have made and a fair response to that contribution.
Patient feedback on the experience of health care can be important for assessment and improvement. The ethical issues associated with obtaining reliable feedback are equally important and need to be addressed in the planning stages of the activity.
“Procedurally, seeking patient feedback and opinion in a systematic way can be categorised as a research activity that will need ethical review by a human research ethics committee.”
Colin Thomson
Colin Thomson
BA, LLB, LLM (Sydney)
www.ehealthinfo.gov.au
Colin Thomson is a Professor in the Graduate School of Medicine at the University of Wollongong and is Academic Leader for Health Law and Ethics.
He is also Associate Editor of the Journal of Bioethical Inquiry and is a joint author of Good Medical Practice: Professionalism, ethics and law, 2010, Cambridge University Press.