Patient and Citizen Involvement

Overview

Vision: Patient and citizen perspectives improve HTA.

The HTAi Interest Group for Patient and Citizen Involvement in HTA (PCIG) brings together patients and citizens, patient advocates, patient engagement consultants, clinicians, researchers (such as statisticians and economists), HTA agencies, government, industry and others with a keen interest in patient and citizen involvement in HTA.

The PCIG considers ‘involvement’, or ‘engagement’, to be a wide-ranging term that encompasses

  • patient and citizen participation in HTA processes, and
  • research to provide evidence about patients’ and citizens’ perspectives, preferences and experiences to input to HTA.

We set out to ‘work together in equal partnership’. All members are considered equal and their input and feedback is equally respected. We are all committed to overall improvement in HTA processes and the availability of equitable quality health care to improve health outcomes.

The members of the Steering Committee and its Working Groups volunteer their time, expertise and energy, with paid assistance coming from the HTAi Secretariat. Some of our members undertake projects that are funded by industry, or they are from industry. When this work is relevant to the PCIG, it is carried out with full scientific rigor and conscientiousness in the delivery of products that our community can use. No one corporate organisation is favoured over another.

As individuals, we find out own way to the HTAi Annual Meetings, but the Secretariat awards several patient travel scholarships each year. Some of the funding for these comes from industry and they are awarded ‘at arm’s length’ by an independent assessment committee.

Aims & Objectives

  • Strengthen HTA by systematic incorporation of patient and citizen perspectives
  • Promote and develop robust methodologies to incorporate patients’ and citizens’ perspectives in HTAs, and share best practice in patient and citizen involvement in the HTA process
  • Develop methods to measure the impact of patient and citizen engagement in HTA, and encourage and monitor new methodologies for obtaining patient evidence
  • Support countries with limited experience of HTA to incorporate patients’ and citizens’ perspectives
  • Promote ways in which patients’ needs, perspectives and preferences can be incorporated into HTAs via submissions of information from patients that will make a difference to decision makers, while enabling effective patient participation in HTA processes (based on core values and standards of relevance, fairness, equity, legitimacy and capacity building)
  • Promote and develop methods to elicit citizen or public views and determine societal values to inform all aspects of HTA
  • Promote the synthesis of patients’ and citizens’ perspectives on the technologies being assessed and the overall societal impact of health technologies
  • Participate in the development of materials that reflect best practices in elicitation and presentation of patients’ perspectives from global good practice models, with support provided by PCIG members, research and patient engagement into the HTA process

Activities

  • Keep our members informed about patient and citizen involvement in HTA with monthly E-Bulletins
  • Support our Steering Committee and Working Groups, who are involved in a wide range of activities including patient involvement and education; methods and impact; and citizens and community
  • Encourage members to join our working groups to advance our shared interests and develop resources for those establishing and developing patient and citizen involvement in HTA
  • Run workshops and panel sessions at the HTAi Annual Meeting
  • Participate in symposiums, webinars and training sessions on a global level
  • Publish papers in peer-reviewed journals
  • Offer advice to stakeholders seeking to improve patient involvement in HTA

Executive Team

Chair: Neil Bertelsen (UK)

Former Chair: Janney Wale (Australia)

Technical Officer: Rebecca Addo (Ghana)

Steering Committee

Neil Bertelsen (UK), Chair
Janet Wale (Australia), Former Chair
Rebecca Addo (Ghana), Technical Officer
Karen Facey (UK)
Sophie Staniszewska (UK)
Sally Wortley (Australia)
Heidi Livingstone (UK)
Hervé Nabarette (France)
Thomas Morel (Belgium)
Valentina Strammiello (Belgium), European Patient Forum
Todd Stephenson (Australia)

Terms of Reference

HTAi Patient Advocates

Eric Low (UK), Amyloidosis Research Consortium Myeloma
Cees Smit (Netherlands), Haemophilia
Marleen Kaatee (Netherlands), PSC Patients Europe
Deb Maskens, Kidney Cancer Canada
Kate Morgan, Myeloma Patients Europe

JOIN THIS IG

Involvement in the IGs is open to all HTAi members with current membership, which allows you to join the IG mailing lists to receive notifications about IG activities and opportunities to get more involved in specific working groups and projects.

To join, or if you have further questions, please contact interestgroups@htai.org.

Follow the PCIG on Twitter at @pcisg.

HTAi Membership

As a member of HTAi, you're become part of an international society of experts and leaders in the HTA field. You can gain access to our Annual Meeting, Policy Forums and Interest Groups, where you can participate in the critical conversations that help inform policy on the use of effective technologies in health assessment.