4.1. Making decisions: Who, How, and Why?

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4.1. Making decisions: Who, How, and Why?

Understanding the underlying ethical principles and recommendations for decision-making does not tell us how we can incorporate those principles into the decision-making process.

When conducting an appraisal of a technology, where societal values and ethical principles are considered in a recommendation, the best health systems aspire to use an approach that embraces these to the greatest extent possible. Rules that govern proceedings that may have far-reaching implications for society are therefore necessary if not an absolute requirement. They encompass procedural rights which include:

  1. Right to participate
  2. Right to a fair and accountable proceeding.
  3. Right to information.

These rights are explored in more detail below.

1. Right to participate – Stakeholder involvement

In the governance of health systems, stakeholder involvement has four major functions:

a) to improve the quality of information concerning the population’s values, needs, and preferences.
b) to encourage public debate over the fundamental direction of the health system.
c) to ensure public accountability for the processes within and outcomes of the system; and
d) to protect the public interest (2).

Processes that attempt to aid decisions need to consider how different stakeholders can be involved in the process to ensure legitimacy of the decision. Decision-making processes are often overseen by a decision-making committee including individuals with different areas of expertise. The membership composition of a decision-making committee may be constrained by the possible impact of decisions, the resources available to support the committee, or the type of technology assessment being undertaken. Discussions frequently occur about who should be involved in the decision-making committee and the potential conflicts of interest that may arise. As everyone within a given health system is affected by decisions about the payment for and use of technologies, a fair approach to recommendations is needed that considers as many views as possible.

There are various stakeholders that might be involved in a decision-making committee:

    • Patients.
    • Citizens.
    • Medical experts.
    • Technology analysts.
    • Company representatives.

In some cases, the preliminary recommendations of a committee may be submitted to a larger public review or to request formal written comments from stakeholders. This is another way to increase involvement. Some have used citizens’ juries, e.g.  panels intended to reflect societal viewpoints, as an input into technology appraisal processes (3).

All of these approaches must be carefully managed so as to prevent undue influence from any particular group. As with any form of political governance, there will be a heightened perception of fairness if transparent rules are in place on who can participate in decision making, how they are chosen and how long they serve.

2. Right to a fair and accountable process

The process of arriving at a recommendation must also reflect underlying principles of justice, in this case procedural justice.

There are three key principles for a fair and accountable process:

  1. Transparency about the grounds for decisions – for HTA this might mean producing a summary document of reasons for a recommendation.
  2. Appeals to rationales that all can accept as relevant to meeting health needs fairly – for HTA, this might mean having a confidential draft available for comment or allowing appeal once a recommendation is made.
  3. Procedures for revising decisions in light of challenges to them – for HTA this might mean changing recommendations once stakeholder concerns have been heard and taken into account.

3. Right to information

Another best practice for creating recommendations is allowing people to view information even if they chose not to participate in the proceedings. Many HTA bodies now make the reports that led to their recommendations widely available on the internet and increasingly strive to explain why they have made the recommendations they have. However, this is not always the case and in some countries the use of HTA is still behind closed doors, with little transparency or possibility for wide stakeholder involvement.