Consumers and Guidelines: How to Involve Consumers in the Development of Best-Practice Guidelines

Barriers to Participation

Barriers to participation was a major focus of the consumers’ workshop. Consumer representatives identified and explored a range of difficulties that they felt limited their ability to contribute effectively. Important among these were:

• lack of confidence
• lack of education
• poor access to information
• differing values of health service providers and consumers
• "the tyranny of the urgent and competing demands on our person as a resource".  ³  

The first three of these – lack of confidence, education and information - are inter-related. The underlying problem for consumers is the (real or perceived) power imbalance that is a consequence of information asymmetry. Throughout the guidelines development process, medical practitioners must bear in mind that their expertise is underpinned by years of training and experience which, if not made accessible to consumers, disempowers consumers from full participation. Of course, this is the primary issue that the NZGG was attempting to address by holding its training workshop for consumer representatives.

The barriers included not only the lack of technical knowledge and skills to deal with scientific and clinical evidence, but also the different value-bases of health professionals and consumers. The most fundamental value difference lies between the authority-based professional culture of the medical practitioner and the egalitarian, participatory culture of the community. Professionalism is based on a hierarchy of intellect, clinical experience and associated status, in which evaluation and regulation are carried out by peers or seniors; whereas consumerism values the contribution of every individual in their own right, regardless of how ill-informed their opinion may be.

Consumers experience health care differently from providers. Their experience of misinformation, misunderstanding, dependency and powerlessness is the basis of the consumer representative’s "expertise". "Specialists’ views of the world are, by definition, unbalanced and incomplete. Professionalism creates distances from the rest of the population, and vests professionals with a variety of interests which may not be consistent with public interests. Processes which acknowledge this bias, and seek to redress it through public participation, are necessary to help rebuild a relevant body of work that is guided by the realities of people’s lives".  ⁴  

Where professionals and consumers attempt to work together, power in the relationship commonly remains with the professionals. To overcome this power imbalance, consumers’ expertise in "the realities of people’s lives" must be recognised and validated. This is not to suggest that professionals don’t have real lives, or that some consumers aren’t as well educated in understanding the literature as professionals. What matters is that the difference in perspective is recognised and that steps are taken to ensure that each perspective fully informs the common goal.

Medical practitioners who engage in guidelines development ought to be sympathetic about one barrier at least – the consumers’ plaint about "the tyranny of the urgent and competing demands on our person as a resource".  ³   Everyone involved in guidelines development seems to be struggling to fit this additional task into lives already crammed with urgent and competing demands. The issue it raises applies equally to both parties – how can we find both the financial and human resources required to do this important job effectively?

At the November workshop, people experienced in guidelines development - some of them medical practitioners, some administrators and some consumers - identified the difficulties associated with consumer involvement. First, there was the difficulty of defining "consumer" in this context: did it mean "patient"? Or could it include "care-giver", "community member", "advocate" or "taxpayer"? Associated with this were concerns about consumers who were either unrepresentative of other consumers, or who were representative of groups with vested interests.

Secondly, there were barriers related to medical practitioners’ stereotypes of consumers, which were the converse of the stereotypes held by consumers about medical practitioners: consumers were variously thought to be unable to analyse evidence, to be objective or to respect confidentiality. Perhaps most telling was the expression of a non-specific discomfort about the presence of consumers in a situation in which doctors seemed to be vulnerable. There seemed to be reluctance to let consumers know that medical practitioners might be uncertain about evidence, disagree about its interpretation and find its application problematic. This is the very uncertainty that Domenighetti argues "is an essential step toward consumer empowerment and the creation of a demand for evidence-based medical practice".  ¹  

Including Consumers

First, let’s define "consumer". Hilda Bastian, Chairperson of the Consumers’ Health Forum of Australia, who led much of the discussion at the NZGG’s June workshop, includes "all those people who use, or are affected by, or who are entitled or compelled to use health care services".  ⁵   Bastian chooses the term advisedly, pointing out that, "When people tussle over a word for ‘consumer’, they are not just seeking an accurate and recognisable description. They are arguing over differing beliefs about the nature of people’s relationships with the health care system, with each of the words weighed down by a lot of ideological baggage".  ⁵   Others have observed that the interests of patients and other consumers may diverge over, for example, access to pharmaceuticals: "Patients are more interested in the therapeutic benefit of drugs, rather than focussing on their adverse reactions. They can live with the side-effects; they will die without the drugs".  ⁶   The NZGG found these differing perspectives reflected within the group it invited to participate in its training workshop. Some participants had current or previous experience of an illness or disability, others were parents or caregivers of those with illness or disability, some were representatives of geographical communities and still others represented voluntary sector health care organisations. A few were lay people with a specialist interest in consumer advocacy. The November workshop group shared Women’s Health Action’s view that any consumer representatives should be both a user of the particular service or person with experience of the particular condition and be actively involved with a community-based group. The advantage of such involvement is that the link ensures accountability to other consumers and support for a representative when difficult issues arise.

The challenge for people who initiate the development of any particular guideline is how to select, out of this complexity of ideology and experience, the right person for the task. Of course, consumers have begun to initiate guidelines themselves, inviting clinicians to join with them, but, in practice, guidelines development is most often initiated by medical practitioners. It may be tempting for practitioners, therefore, to take the closest consumer, perhaps a patient; with luck, the nearest patient may be as good as anyone else. But it’s certainly not a reliable way to recruit the most appropriate person and the last thing needed is a token consumer who can’t contribute. In fact, the best approach is little different from the approach used to recruit anyone else in the team in order to get the best range of contributions. Whether they are recruited through personal contact or by open invitation on the Internet, each of the specialists in a team is a member of a professional body, to which they are accountable. And if a recruiter doesn’t personally know someone with an interest in the topic, chances are they’ll contact the relevant professional body and ask for nominations.

The best way to start selecting a consumer representative is by contacting one of the increasing variety of organisations and networks set up to represent consumer interests - organisations such as Women’s Health Action, the Disabled Persons Assembly, Age Concern, Maori and Pacific Islands or local community health groups. Consumer representatives chosen this way are more likely to be well-informed and aware of wider consumer health issues. They may already have experience and skill in guidelines development work.

Where there is no organisation whose primary purpose is consumer representation, there may be a service provider, such as the National Heart Foundation or the Cancer Society, able to identify consumers who are willing and able to participate.

This is where nervousness about the integration of a consumer representative into a team begins. Where the selection is not controlled and the person identified is difficult to work with, the situation is difficult to remedy. Where the person has been recommended by an organisation or service and a problem arises, complaints can be made to the body that selected the person. Following recommendations from such organisations and services is not guaranteed to provide the ideal consumer representative but will offer this advantage.

The next thing to recognise is that it is important to include more than one consumer representative. Don’t worry – professionals will still outnumber consumers: this would just be taking a small but significant step towards balancing their different perspectives. Even then, token consumers must be acknowledged as representatives only; they do not automatically know everything that every consumer has experienced or would like expressed. For this reason, bear in mind the possibility of exploring complementary methods of acquiring consumer input, such as surveys, focus groups or studies from the Cochrane collaboration’s consumer network.  ⁷