Table 1 Patient engagement and IKT goals and outcomes

Patient Engagement Goals and Outcomes

Providing or sharing information with community and patient groups as a means of increasing awareness of a healthcare or research issue.

Garnering public feedback on research activities or outcomes. This may be undertaken to seek clarification or direction around a given issue.

Patients are engaged to provide insights to guide the decision-making within the research process. This may be isolated to key stages of the research or on an ongoing basis.

Patients and members of the public are engaged as members of the research team and contribute to shared decision-making across the research process.

Patients and members of the public provide direction and leadership about a given research endeavor.

Integrated KT

Goals and Outcomes

IKT research team may tailor and share messages with community and patient groups, this in isolation would not be considered IKT research as patients or community members have not had the opportunity to engage in the wider decision-making.

IKT research teams may consult with members of the public during the research process as a means gaining input about the research process or outcomes. This activity would not be considered an IKT research process but may be considered an outcome of the IKT process.

IKT research teams may involve patients and members of the public to solicit input around decision-making, however, without full collaboration and decision-making authority, this type of engagement would not be considered IKT research.

IKT as a collaborative model of research fosters partnerships between knowledge users and researchers.

When meaningful collaboration and shared decision-making occurs across the research process, this would be considered IKT research.

Within IKT research, team members contribute to the collaborative research processes, within which a patient may lead or be responsible for a specific element of the research. However, where patient leadership occurs independent of the broader team, this would be not considered IKT research.

Examples

Plain language summaries, publicly accessible reports, or social media messages.

Deliberative dialogue, town hall meetings and policy consultations.

Patient advisory councils or stakeholder priority setting activities.

Patient engaged as research co-lead or members of the research team.

Patient groups or members of the public voting about research priorities, or directing and leading research activities.