The principles of informed choice

Informed choice is a key component of acceptability, which is integral to assessing benefits of screening programmes.

 

Table 3.6.1: Definitions of choice and informed choice

Terms/Definition

 

Informed choice

One that is informed, consistent with the decision maker's values, and behaviourally implemented

Informed decision

One where a reasoned choice is made by a reasonable individual using relevant information about the advantages and disadvantages of all the possible courses of action, in accord with the individual's beliefs

Autonomous choice

One which occurs when people act (1) intentionally, (2) with understanding, and (3) without controlling influences that determine their actions

Evidence based
patient choice

The use of evidence based information as a way of enhancing people's choices when these people are patients

From: Jepson et al (2005)

 

The GMC proposes that people need the following information in order to make such an informed decision (or choice) in screening:

  • The purpose of the screening;
  • The likelihood of positive/negative findings and possibility of false positive/negative results;
  • The uncertainties and risks attached to the screening process;
  • Any significant medical, social, or financial implications of screening for the particular condition or predisposition;
  • Follow up plans, including availability of counselling and support services.

 

The Problem

  • Evidence that a screening programme will reduce mortality is not sufficient alone to introduce a screening programme. A full analysis of benefits and harms should include not only the screening, but also the follow-up tests and indicated treatments.
  • Many screening programmes focus on maximising participation. However, a high participation rate is not needed to achieve screening population-level benefit and cost-effectiveness. Maximising participation per se may not achieve equitable access. It is known that there are groups in the population where participation is lower, including more deprived communities, ethnic minority communities, Gypsy and traveler groups.
  • Incentive payments to service providers (usually for the participation rate) may reduce the motivation to provide real informed choice.

 

The solution

  • Consultation with an informed public is essential. Constructs of utility measures are also helpful to assess the balance between harms and benefits.
  • Informed consent of individuals participating in a screening programme is difficult to achieve as this requires patient autonomy, itself contingent on access to unbiased information on the benefits and harms of screening. Existing information about most screening programmes may overemphasise the benefits.
  • Balanced information may include information about how similar individuals perceive the harms and benefits.
  • There needs to be a specific focus on reducing inequity. Uptake overall can be increased whilst increasing the gap between communities, e.g. changing our public information might increase participation only in the more affluent groups, widening the gap with the more deprived groups.

 

Further issues

  • Increasing informed choice should lead to a better benefit:harm ratio.
  • Informed choice should be a dimension of screening programme evaluation.
  • Assessment should include availability of understandable information, presenting risk data as absolute risk, and access to choice and decision support.

 

Reference materials

  1. Irwig L, McCaffery K, Salkeld G, Bossuyt P. Informed choice for screening: implications for evaluation. BMJ. 2006 May 13;332(7550):1148-50.
  2. Roelens K, Verstraelen H, Van Egmond K, Temmerman M. A knowledge, attitudes, and practice survey among obstetrician-gynaecologists on intimate partner violence in Flanders, Belgium. BMC Public Health. 2006 Sep 26;6:238.
  3. Marteau TM, Dormandy E, Michie S. A measure of informed choice. Health Expect 2001;4:99-108.
  4. General Medical Council. Seeking patients' consent: the ethical considerations. London: General Medical Council, 1999.
  5. Jepson RG, Hewison J, Thompson AG, Weller D. How should we measure informed choice? The case of cancer screening.  J Med Ethics. 2005 Apr;31(4):192-6.
  6. Barratt A, Trevena L, Davey HM, McCaffery K. Use of decision aids to support informed choices about screening. BMJ. 2004 Aug 28;329(7464):507-10.
  7. Gigerenzer G, Gaissnaier W, Kurz-Milcke E, Schwartz LM, Woloshin S. Helping Doctors and Patients Make Sense of Health Statistics.  Sage Journals. 2007 Nov 1;8(2),53-96.     http://journals.sagepub.com/doi/abs/10.1111/j.1539-6053.2008.00033.x

 

 

                              © Dr Murad Ruf and Dr Oliver Morgan 2008, Dr Kelly Mackenzie 2017