4. Patients’ different roles in HTA
Approaches to patient involvement vary according to the healthcare system and country. These approaches may be:
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Bottom-up – in which the focus is on direct participatory involvement of patients, incl. family and caregivers.
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Top-down – in which the public are merely represented or consulted, incl. public consultation when the HTA report or the political decision has been made.
Balancing individual needs with those of the wider population is a key consideration in patient and public involvement. Measures should be taken in order to address inequalities between the strength of the voices of professional and industry interests and those of citizens and patients.
Simply advocating that a new technology is ‘needed’ once it is being assessed, is not enough to influence the decisions of publicly accountable decision-makers and the HTA bodies that support them. Rather, active patient participation providing evidence-based information in one or several of the sub-groups affiliated to the HTA body will ensure a consistent focus on the patient.
The role of patients may begin with making sure that an appropriate patient involvement in HTA process is put in place at national or local level. This includes:
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Checking whether the local HTA body has a manual of guidance on methods and evaluation and if not, propose the implementation of a suitable approach. This could foster consistency in scientific analysis and use of transparent and up-to-date comparable approaches.
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If a manual exists, reviewing whether it includes methodologies for assessing patient-reported outcomes, experiences, health-related quality of life, and other patient-centred measures—or requesting their inclusion.
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Ensuring that patients have clearly defined roles across different stages of the HTA process.
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Supporting patient involvement in defining the HTA question(s).
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Promoting the use of explicit, transparent processes for data collection and analysis.
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Contributing to the interpretation and evaluation of data relevant to patients.
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Participating in committees making HTA recommendations.
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Providing feedback during public consultations