3. Values and quality standards for patient involvement in HTA

Values and quality standards for patient involvement in HTA

In 2014, Health Technology Assessment International (HTAi http://www.htai.org/) worked with a wide range of stakeholders internationally to develop values and quality standards for patient involvement in HTA. These values are the underpinning principles that indicate why it is important to involve patients in HTA. The quality standards are practical steps that HTA bodies can take to ensure effective involvement of patients in an individual HTA and when shaping the general process for an HTA.

Values for patient involvement in HTA:

Relevance: Patients have knowledge, perspectives and experiences that are unique and contribute to essential evidence for HTA.

Fairness: Patients have the same rights to contribute to the HTA process as other stakeholders and have access to processes that enable effective engagement.

Equity: Patient involvement in HTA contributes to equity by seeking to understand the diverse needs of patients with a particular health issue, balanced against the requirements of a health system that seeks to distribute resources fairly among all users.

Legitimacy: Patient involvement fosters the participation of those affected by the HTA recommendations and decisions. This contributes to the transparency, accountability and credibility of the decision-making process.

Capacity building: Identify barriers to involving patients in HTA and build capacity for patients and HTA organisations to work together.

Quality standards for patient involvement in HTA:

1. HTA organisations have a strategy that outlines the processes and responsibilities for those working in HTA and serving on HTA committees to effectively involve patients.

2. HTA organisations designate appropriate resources to ensure and support effective patient involvement in HTA.

3. HTA participants (including researchers, staff, HTA reviewers and committee members) receive training about appropriate involvement of patients and consideration of patients’ perspectives throughout the HTA process.

4. Patients and patient organisations are given the opportunity to participate in training to empower them so that they can best contribute to HTA.

5. Patient involvement processes in HTA are regularly reflected on and reviewed, taking account of the experiences of all those involved, with the intent to continuously improve these processes. 

1. Proactive communication strategies are used to effectively reach, inform and enable a wide range of patients to fully participate in each HTA.

2. Clear timelines are established for each HTA with advance notice of deadlines to ensure that appropriate input from a wide range of patients can be obtained.

3. For each HTA, HTA organisations identify a staff member whose role is to support patients in contributing effectively to HTA.

4. In each HTA, patients’ perspectives and experiences are documented and the influence of patients’ contributions on conclusions and recommendations is reported.

5. Feedback is given to patient organisations who have contributed to an HTA, to share what contributions were most helpful and provide suggestions to assist their future involvement. 

The implementation of these values and quality standards is at an early stage, but patient groups have an important role to play in promoting them with HTA bodies and are urged to engage in HTAi activities to foster their use.