patient and citizen Involvement

patient citizen involvement


To support good practice, PCIG develops resources based on published literature and consultation with our members and stakeholders. Here you’ll find our resources to support patient participation and patient-based evidence. There’s also a tab for of our partners and friends and our which contains older resources that are less often used or not updated.


HTA and patient involvement presentation: Slides

HTAi Values and Quality Standards for Patient and Citizen Involvement in HTA: Poster (English) PDF (English) PDF (French)

HTA terms in plain language.
English | Greek


Plain language summaries of applications to HTA bodies for patient groups:

Written submission templates for adaptation (word docs)

Guidance for patient groups collecting and reporting information for input: PDF | Word.

Ethics for patient group collecting and reporting information for HTA input Short (2 pages) | Long (7 pages)

Engaging patients in Early Dialogue: Tools and resources for HTA bodies (PCIG for IMI PARADIGM)

Patient and Citizen Involvement Resource Directory: Collection of government and organization resources to assist patient and citizen involvement in HTA


Conducting primary and secondary research to determine patients’ perspectives – Guides from other HTA Agencies: Denmark | Scotland | Sweden

Rapid Qualitative Evidence Synthesis Methodology | Coding Template | Guide


Perspectives of impact: share your experience of a time when patient involvement had an impact in HTA Impact template


INAHTA Position Statement on Patient Involvement in HTA (the who, what, when, how and why)

Guidelines International National Public Toolkit: Patient and public involvement in guidelines. Including consultation, participation, communication and a chapter on HTA tools

Patient Involvement in HTA in Europe: A 360° Review of Stakeholder Experiences with Patient Involvement in HTA in Europe

Health Equality Europe: A Guide to Understanding HTA for Patients and the Public
English | Spanish | Mandarin | Italian | Polish | Greek

The European Patients’ Academy (EUPATI) – Short guides and videos about HTA (Weblink) Patient Expert Training Course, including module on HTA 

CADTH pan-Canadian Oncology Drug Review (pCODR) Guide for Patient Advocacy Groups (PDF) to provide submissions for oncology drugs undergoing HTA review

Scottish Health Council (SHC) Participation Toolkit: How to Conduct Surveys

Scottish Medicines Consortium (SMC) Review of Patient Involvement


Granados A, Mullin T, Moseley J, Meyer F, Avetisyan R, Wong-Rieger D, Kaatee M, Skinner M, Leyden S. Multistakeholder Approaches to Improve Evidence-Based Decisions in Rare Diseases: Engagement of Patients and Patient Organizations. Report of HTAi 2016 Panel Session. Health Technology Assessment International – Canada. 2016

HTAi PCIG (Feb 2015) Good Practice Examples of Patient and Public Involvement in Health Technology Assessment.

FAQs could be one document for all three.

Citizen and Patient Involvement Library: HTAi Vortal – A searchable collection of peer reviewed papers on patient and public involvement in HTA. This resource was developed in collaboration with the Information Retrieval IG.


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


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


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.


Patient involvement facilitates those affected by the HTA recommendations/decision to participate in the HTA; contributing to the transparency, accountability and credibility of the decision-making process.


Patient involvement processes address barriers to involving patients in HTA and build capacity for patients and HTA organizations to work together.



  1. HTA organizations 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 organizations 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 organizations 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 them.


  1. Proactive communication strategies are used to effectively reach, inform and enable a wide range of patients to participate fully 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 organizations identify a staff member whose role is to support patients to contribute effectively to HTA.
  4. In each HTA, patients’ perspectives and experiences are documented and the influence of patient contributions on conclusions and decisions is reported.
  5. Feedback is given to patient organizations who have contributed to an HTA, to share what contributions were most helpful and provide suggestions to assist their future involvement.

Supported by an unrestricted grant from Eli Lilly (June 2014)

Also available as a poster or two-page PDF in English and French.


  • Endorse them
  • Nominate an organization for ‘excellent effort’ to attain them



The International Alliance of Patient Organizations (IAPO)

IAPO is a global alliance representing patients of many different nationalities across disease areas and promotes patient-centred healthcare around the world.

Guideline International Network (GIN) Patient and Public Involvement Working Group

GIN PUBLIC Toolkit about Patient and Public Involvement in Guidelines: experiences of the organizations involved in guideline development.


INAHTA is a network that connects HTA agencies to each other to support knowledge sharing and the exchange of information, and also to serve as a forum for the identification and promotion of other interests of HTA agencies.

INAHTA Survey on the Involvement of Patients in HTA Activities Download survey report

This report compares survey data from 2005 and 2010 of INAHTA members. The objective was to obtain information on what INAHTA member organizations did and what they avoided in involving consumers in the HTA process.

World Health Organisation (WHO): Universal health

European Patients’ Forum

European Patients’ Forum: Patient Involvement in HTA in Europe – an interim report on EPF’s survey with HTA agencies

The European Patients Forum (EPF) completed three phases of research to understand the involvement of lay patients, informal carers and patient organisations EU member states HTA and decision making processes. The reports cover three areas of patient involvement:

  • HTA agencies
  • HTA appraisal committees and decision makers
  • Patient organizations

European Academy of Patients (EUPATI)

The European Academy of Patients is an initiative of IMI (Innovative Medicines Initiative) whose goal is to offer patients and their families opportunities for training in research and development of medicines and therapies, with an emphasis on scientifically valid information. Launched in 2012 with joint funding from the European Community and EFPIA (European Federation of Pharmaceutical Industries and Associations), it involves a consortium of 30 organizations and extends, for the moment, throughout 12 countries of the European Community.


To create an effective and sustainable network for HTA across Europe – by working together to help developing reliable, timely, transparent and transferable information to contribute to HTAs in European countries.

The International Society for Pharmacoeconomics and Outcomes Research (ISPOR)

Promotes the science of pharmacoeconomics (health economics) and outcomes research (the scientific discipline that evaluates the effect of health care interventions on patient well-being including clinical, economic, and patient-centered outcomes) and facilitates the translation of this research into useful information for health care decision makers to increase the efficiency, effectiveness, and fairness of health care to improve health.

Patients Active in Research and Dialogues for an Improved Generation of Medicines (PARADIGM)

This is a public-private partnership, co-led by the European Patients’ Forum and EFPIA, to advance meaningful patient engagement in the life cycle of medicines for better health outcomes. The PCIG is a member of this partnership.

Patient Focused Medicines Development (PFMD)

PFMD aims to transform the way in which we understand, engage, and partner with patients globally in the design and development of research and medicines by focusing on unmet patient needs. It brings together and synergizes disparate but complementary efforts that integrate the voice of the PATIENT across the lifecycle of medicine.


This page provides information about HTAi Patient and Citizen Involvement Interest Group’s (PCIG) current projects. Click on the projects for more detailed information or the tabs on the left for information about past projects and guidance about proposing and leading projects.

Project #E002
360° HTA Patient Involvement – Europe

Aim: This research will include a 360° review of current methods and processes for patient involvement in Europe, how they are perceived by those involved, and a co-creation of best practices.

Further information

Patient Participation at the Organizational Level

Project #001
Better understanding of patient participation in organizational domain; identifying how/what topics dialogue between patients/patient groups/citizens & HTA bodies is occurring, what facilitates it. Lead: Hervé Nabarette (AFM-Téléthon)

Further information

Stakeholders’ Perspectives of Impact (in patient involvement in HTA)

Project #002
Aid reflection on the impact & mechanisms of patient involvement by trialing the use of a template to capture different stakeholders’ perspectives/stories. Leads: Aline Silva & Veronica Lopez Gousset (VLG Consulting)

Further information

Low- and Middle-Income Countries (with Developing Countries Interest Group)

Project #004
Collaborate with LMIC stakeholders to define LMIC-specific needs for patient involvement. Develop & adapt appropriate guidance & tools. Leads: Anke-Peggy Holtorf (Health Outcomes Strategies GmbH) & Jani Mueller (CMeRC)

Further information

Patient Preferences

Project #011
To collaborate with key stakeholders to provide HTAs with actionable resources to increase implementation and adoption of patient preferences in decision-making. Leads: Simon Fifer (CaPPRe) & Barry Liden (Edwards Lifesciences)

Further information

Patient Insights Research Platform

Project #010
Aim: A whitepaper detailing pre-requisites & stakeholder expectations of a structured, observatory platform to collect & analyse social media content to inform HTA bodies of patient needs & experiences. Leads: Anke-Peggy Holtorf & Andrii Danyliv (Novartis)

Further material

Implementation of Summary of Information for Patients

Project #010
Encourage implementation & adoption of template worldwide by raising awareness & developing training & communication resources, pilots & by obtaining stakeholder feedback Leads: Martin Coombes (BMS) & Kate Morgan (Myeloma Europe)

Further information

Patient & public involvement at HTAi Annual Meeting

Project #012
Build on pass work to generate HTAi guidance to ensure meaningful, welcoming and well-supported patient and public involvement at HTAi Annual Meetings.

Further information

Project support

  • Project Sub-Committee Proposal
  • Project Update template
  • PCIG Terms of Reference
  • Project Proposal Guidance
  • Lessons from past projects

Project Support

Since it began in 2005, PCIG has developed a reputation for providing practical products to meet the needs of those working in patient involvement in HTA. These projects haves been characterised by an inclusive approach which recognises the value of robust evidence, multi-stakeholder expertise and wide consultation.

There are no set criteria for project proposals. The key requirement is to identify a need related to patient involvement in HTA and then put together a sub-committee to scope and complete the project with appropriate oversight from the Steering Committee and consultation with the wider Interest Group. The projects can be short or long and with large or small goals. Typically, PCIG projects address areas such as developing involvement and educational materials and processes, exploring methodological issues, developing resources and tools which can be used or adapted by others.

The PCIG Steering Committee will approve up to eight projects at any one time. Each Project Sub-Committee shall have a lead and up to 12 members. Members of Project Sub-Committees must be members of PCIG and Project Sub-Committees must provide quarterly reports to the Steering Committee for publication on the website.

For more information, contact the PCIG Project Coordinator, Anke-Peggy Holtorf, email: [email protected].


HTAi Patient Preferences Webinar Series

A series of four one-hour webinars providing an introduction to patient preference research that over the series will explore its use in HTA.

The development of patient involvement in Health Technology Assessment (HTA) represents a shift towards increased patient-centricity in the allocation of scarce health resource.

In the past decade, the focus has been on supporting ‘expert patients’ or patient representatives to participate in the HTA appraisal process, with individual patients or patient organisations invited to contribute information in-person or via a structured template.

However, participation in this way is only one aspect of patient involvement: another way is the use of evidence generated from patient-centred research. Systematic approaches to studying patient needs, choices, experiences and preferences can yield important findings to help resolve uncertainties in clinical and cost effectiveness.

One form of evidence that has received increased interest in recent years is patient preference studies. These studies systematically capture qualitative and/or quantitative information on how patients value the benefits, risks and other characteristics of potential treatment alternatives using specific methods for patient preference elicitation.

Patient preference studies could help identify the outcomes and improvements that are most important to patients, while potentially addressing some of the perceived challenges with patient participation approaches, including the robustness, quality, partiality and consistency of input.

However, the role of patient preference evidence in HTA is as yet undetermined and remains a subject of continued interest and debate: how can we best embrace new forms of patient-based evidence alongside more traditional forms of input, and will patient preference evidence redefine the future of ‘the patient voice’ in HTA?

HTAi aims to consider each timezone, and all sessions will be recorded for subsequent viewing.

Each webinar is approximately 60-minutes long.

Webinar One

Introduction to Patient Preferences in HTA Decision-Making
The first of four webinars to help HTAs better understand the role of patient preferences in HTA reviews.

This webinar will provide some basic understanding of what patient preferences are, how they can be used in HTAs, and provide participants with an opportunity to raise questions to be addressed in this or subsequent webinars.


  • Simon Fifer, Director of Research and Innovation, Community and Patient Preference Research (CaPPRe), Australia
  • Barry Liden, Patient Engagement, MedTech Industry Executive, Edwards Lifesciences; Advocate; Adjunct Faculty, Associate Professor at Georgetown University


  • Ann Single, PCIG Chair
  • John Rose, University of Technology Sydney
  • Deborah Marshall, Professor, Cumming School of Medicine, University of Calgary and PCIG
  • Patient Preferences Group member
  • Patient Preferences Group member

Date: June 29 2020, 06:00 MDT (UTC -6)

View the recording

Webinar Two

Designing Patient Preference Studies for HTA— Moving from Aspiration to Application in Patient Engagement

Patient and patient advocacy engagement in HTA has evolved in recent years to include consideration of patient perspectives by expert committees making recommendations on coverage. As the role of evidence from routine clinical practice, patient reported outcomes and patient experiences grows, patient values and preference data provided by patients and patient advocacy groups provide opportunity for a better appreciation of the patient experience.


  • Deborah A Marshall (Moderator), Professor, Cumming School of Medicine, University of Calgary and PCIG Patient Preferences Group member
  • Barry Stein (Moderator), Patient Engagement, MedTech Industry Executive, Edwards Lifesciences; Advocate; Adjunct Faculty, Associate Professor at Georgetown University
  • Alexandra Chambers, Manager, National Oncology Policy, Novartis Oncology
  • Winson Cheung, Professor of Medicine, Department of Oncology, University of Calgary; Provincial Director, Health Services Research, Cancer Control Alberta.

Date: July 24, 2020, 06:00 MDT (UTC -6)

View the recording

Webinar Three

Patient Preferences Research in HTA Decision-Making

Webinars One and Two have introduced how patient preferences research can be undertaken to inform questions of relevance to HTA. There has been recognition that this rigorous research can provide robust patient-based evidence that could inform HTA recommendations and decision-making. However, few HTA bodies are aware of the rigour of patient preference research or where it could inform the value judgments and help resolve the uncertainties that are inherent in HTA.

Webinar Three will involve presentations from three HTA bodies across the globe and a research organization, demonstrating how patient preferences have been used in actual HTAs for different forms of health technology. Panel discussion will explore where patient preference research can add the most value in HTA,

challenges to using this type of evidence to inform decision-making and what can be done to facilitate its use in HTA.


  • Karen Facey (Moderator), Evidence-Based Health Policy Consultant, University of Edinburgh, Scotland
  • Adrian Skelly (Moderator), Global Strategic Assistant to Head of Global Patient Access, Novartis Pharma, Switzerland
  • Simon Fifer, Director of Research and Innovation, Community and Patient Preference Research (CaPPRe), Australia
  • Irina Cleemput, Senior Health Economist, Belgian Health Care Knowledge Centre (KCE), Belgium
  • Jacoline Bouvy, Senior Scientific Advisor, National Institute for Health and Care Excellence (NICE), UK
  • Nancy Sikich, Clinical Epidemiologist, Health

DATE: September 28, 2020
TIME: 6:00 a.m. – 7:30 a.m. MDT

View the recording

Webinar Four

Patient Preferences and Values Studies in Oncology and Rare Diseases– Redefining Patient Advocacy in the HTA

Webinars One, Two and Three have examined how patient preferences research can be undertaken to inform questions of relevance to HTA and presentations from three HTA bodies across the globe and a research organization have demonstrated how patient preferences have been used in actual HTAs for different forms of health technology.

The final webinar in the series will explore how patient preferences and values research can redefine patient advocacy and move it into an era of empirical evidence. It will look at the practicalities involved in conducting preference and values research, using specific examples from oncology and rare diseases.

There will also be a summary of learnings from all four webinars and a discussion around what action can be taken to encourage patient organizations to undertake more preferences research and for how HTAs can incorporate this research more readily into their decision-making.


  • Eric Low (Moderator), Director, Eric Lowe Consulting, Scotland
  • Barry Stein (Moderator), CEO, Colorectal Cancer Canada, Switzerland
  • Zack Pemberton-Whiteley, Leukaemia Care UK, England
  • Axel Muehlbacher, Professor of Health Economics & Healthcare Management, Hochschule Neubrandenburg, Germany

DATE: October 26, 2020, 7:00 a.m. – 8:30 a.m. MDT

View the recording

PCIG Webinar to INAHTA

In 2017, the PCIG presented an overview of their experiences with patient involvement to the membership of INAHTA. In this webinar the work of two HTA agencies, who have used the PCIG resources are presented, along with an overview of the work of the IGs and the desire for a collaborative approach to patient involvement.

View the recording

Do Patient Preferences Influence HTA Decisions?

Date: November 18, 2021 

The HTAi PCIG Patient Preference Sub-Committee has initiated a project designed to improve the likelihood that patient preferences can and will be used more frequently in HTA decision-making. The initial step in the project is to conduct an assessment of the current landscape of HTA use of patient preferences in HTA decision-making, and interest in doing so if not currently doing so. Out of that assessment, the PPWG will facilitate a co-created patient preference study between multiple HTA’s in a case study, where observations about best practices and considerations for adoption will be made.

  • Moderator: HTAi PCIG PPWG representative, Barry D. Stein, President/CEO Colorectal Cancer Canada
  • HTAi PCIG PPWG co-chair, Barry Liden, VP Patient Engagement, Edwards Lifesciences to present HTA survey findings
  • HTA representatives to react to findings and share thoughts/responses to questions:
  • Jacoline Bouvy Technical Director, National Institute for Health and Care Excellence, NICE
  • Nicole Mittmann Chief Scientist/VP, Evidence Standards, Canadian Agency for Drugs and Technologies in Health
  • Laurie Lambert Lead, Real World Evidence Strategy, Evidence Standards, Canadian Agency for Drugs and Technologies in Health
  • Industry representative to react to findings and share thoughts/responses to questions
  • Alex Chambers Manager, Health Policy and Patient Access, Novartis Pharmaceuticals Canada

View the recording

HTA Informing Innovative Drugs’ Market Access in Low- and Middle-Income Countries

Date: January 20, 2022

The WHO identifies achieving Universal Health Coverage (UHC) as a strategic priority, encompassing a full range of essential health services, of which technology constitutes a core component. It is a significant challenge for many countries, especially low- and middle-income countries (LMICs), to increase their use of scarce public resources to ensure their citizens’ access to innovative pharmaceuticals. The dilemma of high costs, limited access, and UHC calls for innovative approaches and solutions.

This webinar demonstrates how HTA informs innovative drugs market access in different LMICs, and it could address how HTA researchers or HTA institutions respond to the innovative technology with capacity competency. It is a pilot to facilitate HTA communication and collaboration by DCIG. It will map market entry, reimbursement policy for innovative drugs and HTA roles, value frameworks and methodology, institutional challenges, and potential regional/international HTA collaboration.

Speakers will present innovative drugs market entry and reimbursement in different continents, analyzing how HTA is conducted and the value frameworks used in different countries. It will summarize challenges to HTA capacity or competency and information shared with other countries for reference

  • Moderator: Yingyao Chen
  • Jeonghoon, from Korea, Korea experience
  • Debora Aligieri (Patient representative Brazil)
  • Salome Meyer (Patient representative, Cancer Association, South Africa)
  • Kiusiang Tay-Teo, (Health Products Policy and Standards Medicines and Health Products, WHO.
  • Mouna Jameleddine, INEAS, Tunisia

View the recording


Co-Chairs: Fiona Pearce, Singapore | Aline Silva, Canada
Vice Chair: Zal Press, Canada
Outgoing Chair: Ann Single, Australia
Technical Officer: Hadewych Honné, Belgium

HTAi Bylaws 

PCIG Terms of Reference