Community values in healthcare

19 January 2004

 

Dear All

Herewith a summary of this article in the current MJA. It is evident that the community need to be informed . The aim of the Medical Renaissance Group is to encourage Community involvement as to the nature of the current Health Crisis and what we can do to alleviate it

Michael

Whose health service is it anyway? Community values in healthcare

Gavin H Mooney and Scott H Blackwell

MJA 2004; 180 (2): 76-78

There are various problems with seeking community preferences to guide healthcare: the time taken to achieve consensus, the difficulties in establishing informed choice, the tendency for pressure groups and interested parties to outweigh the silent majority, and so on. None, we believe, is insurmountable. There are issues of broad principle (such as equity) that do seem to be best handled by referring to community values. How best to elicit such values remains subject to debate and requires more research. Exactly which decisions, to what extent and in what way, should be influenced by community values will (we suspect) always be a contentious question and will not necessarily be answered in the same way in all health service jurisdictions. Citizens’ juries are one way forward. The best approach will vary depending on the questions being asked, the community concerned and the resources available. However, we would submit that the need for good information, choices constrained by resources, and time to reflect are requirements of any process for eliciting community v

Means of public participation

Mort and Harrison suggest that "being in favour of public participation is rather like being against sin; it is hard to find disagreement".3 While in recent years there has been growing interest in involving the community in health service planning and decision making, such participation has a lengthening history dating back for at least half a century. One might argue that the idea goes back much further, to the age of enlightment, when Rousseau wrote of his ideal society: "Bands of peasants are seen regulating affairs of state under an oak, and always acting wisely."4

Some milestones in public participation

1954: WHO recommends involvement of the general public in health education policy making5

1977: UN report sees public participation as a central tenet of primary health care6

1984: World Federation of Public Health Associations calls for public participation in primary health care to build on local knowledge7

Early 1990s: Public involvement in setting health service priorities in New Zealand8

1994: Oregon makes first explicit attempt at health care rationing in the US9

1995: WHO reaffirms the importance of community participation in health promotion10

1990s: Citizens’ juries in the UK11

Scarcity of resources is a fact of healthcare. This needs to be recognised by the potential respondents to any community survey, thereby avoiding "wish listing" in an environment where the opportunity costs of choices are not apparent. The sorts of choices they should face are those that health service planners face: whether to spend more or less on interventions in maternity care or the mentally ill; more or less on urban, rural or remote healthcare; on the young or the old; on Aboriginal or non-Aboriginal healthcare.

In the literature there is little discussion on what approach to use in eliciting community preferences. Is the intention to obtain community values by aggregating the preferences of individuals concerned for themselves? Or by asking individuals to put themselves in the position of planners acting on behalf of a community such as, say, the Perth community or the Australian community? Or are community values best discovered by allowing a communal discourse that gradually reveals a consensus? Each approach is likely to reveal a different set of community preferences. The usefulness of each approach will be partly dependent on what kind of decision making the results are intended to guide.

Dolan et al consider three perspectives:12

  • personal — value to the individual self
  • social — value to others
  • socially inclusive personal — value to others plus self.

A fourth is the "communitarian" perspective,13 where the community and not an aggregation of individuals might be the focus. The Perth citizens’ juries, where consensus was sought rather than the sum of individuals’ votes, might be seen in these terms.

There are various techniques available for finding community values. In addition to citizens’ juries, these include deliberative democracy, focus groups, opinion polls, conjoint analysis and several others.14-17 There is too little evaluation of these to judge which is best. Such a judgement may not be possible: each technique may have its place.

We recommend that any process for eliciting community values should provide:

  • sufficient information (because the exercise of preferences must be well informed)
  • opportunity for respondents to reflect and deliberate
  • recognition of the scarcity of health service resources (because preferences are truly revealed when one is required to make a choice).

Expert views or medical specialist knowledge may be important inputs, providing information that is then filtered through a random group of citizens engaged in deliberation and reflection. Such a process allows the social context to be added to medical science.

Many decisions in healthcare are complex and technical. At the clinical level, society trains doctors to act as patients’ agents to allow the patient (or sometimes the doctor on behalf of the patient) to make decisions that are more informed than those of the patient alone. Above the level of individual clinical decisions, there are questions of resource allocation and policy that are very much social choices. They still have to be informed by technical information. In between, doctors are faced with many decisions where it is less clear which values should apply. Partly this is because it is difficult to decide where the dividing line should come between professional and social value judgments; partly because some decisions are so technical and complex that citizens cannot make truly informed choices. However, citizens may accept their limitations in some areas of decision making, while insisting on their right to decide in others. Citizens may choose the issues for which they want their preferences to be counted. They may thus have "preferences for preferences".

This last issue has received less attention than it merits. In a study in Australia, Wiseman et al showed that citizens were keen to be involved in healthcare decision making,17 but saw this as "involving other groups, namely clinicians, health service managers, and patients and their families". The desire to be involved varied with the type of decision (eg, citizens were less inclined to want to be involved in decision making "concerning specific medical procedures").

We would argue that the sorts of decisions for which health services should seek to discover community preferences are those:

  • for which citizens can be given adequate information at not too high a cost
  • in which they themselves have a preference for being involved.

These principles point to more community involvement at the broader level, such as in determining the principles that underlie healthcare services in general, or what has been called "a constitution" for health services.18

 



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