5. Patient involvement in different phases of HTA

HTAs have first and foremost been formulated on the basis of experts’ knowledge of a given health technology with the aim of providing the basis for political and/or administrative decision-making. A review of 50 HTA reports from eight countries over the period 2000 – 2005 has shown that clinical studies are usually taken as the basis when patient aspects are discussed – and not      the actual effects related to the patient’s everyday life or treatment situation (10). This is in spite of the fact that the patient is the only one with direct experience of an overall course of events.

In recent years, it has become increasingly important to include patients’ own experiences, preferences, resources, needs, requirements and assessments in HTAs and to have local patients in different roles to ensure that the data and evidence assessed reflect the situation of patients on national and local level.

Patients can contribute to the HTA by producing knowledge from different perspectives:

• An individual perspective: Focus on the individual patient in relation to his or her everyday life
• A group perspective: Focus on a group of patients’ experiences and assessments of the effect of a given technology on their everyday lives
• A social perspective: Focus on patients as citizens, users, consumers and, for example, their assessment of how different technologies should be prioritized or what criteria should underpin the introduction of a specific technology.

At a more detailed level, this ensures that the following aspects are included in the evidence assessment:

• Patients’ knowledge and experiences of a given technology
• Patients’ preferences, needs and expectations of the technology
• patients’ visions and requirements concerning the technology
• Economic aspects and organization (impact on the individual patient)
• How customs, attitudes and traditions influence patients’ experiences, preferences, etc.
• What importance the technology has or may have for the patient’s everyday life
• How patients’ self-care and/or empowerment resources are best exploited
• And what opportunities and limitations apply to self-care/empowerment

For an HTA of high quality and transparency - and for decision makers to have a well-founded justification for their decision - evidence of above aspects must be produced and presented in a scientific way. Patients and organizations should therefore ensure that the people who represent them on boards, in committees and working groups have sufficient understanding of how to produce and interpret this kind of data.

The following sections provide recommendations for patients on when to provide input to the HTA and where to help defining, interpreting and synthesizing data that is most meaningful and relevant to them.