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.

GETTING STARTED:

Introductory presentation on HTA and Patient Involvement: Slides
HTAi Values and Quality Standards for Patient and Citizen Involvement

• Poster (English)
• PDF (English)
• PDF (French)

HTA terms in plain language. English | Greek

PATIENT PARTICIPATION:
Patient participation in HTA refers to activities through which patients contribute their knowledge regarding their needs, preferences, experiences and perspectives before, during or after an HTA to influence individual HTAs, methods, processes, governance and policy. Participation ways can range from a passive participation associated with receiving information to control over decision making. A variety of tools and guidance have been developed to facilitate participation:

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

• Template | Overview
• Guidance for industry | HTA bodies | Patient groups

Written submission templates for adaptation (word docs)

• Medicines HTA
  • English
  • French
  • Spanish
  • Cover Note
• Non-medicines HTA
  • English
  • French
  • Spanish – modified
  • Cover Note
• Diagnostics HTA
  • English
  • Spanish – modified version
  • Guide
  • Info for Patients
  • Cover Note for Agencies
• Re-appraisal of rare disease treatment
  • IMPACT HTA

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). Bertelsen N. Patient Engagement in Early Dialogues: Tools and resources for HTA bodies. PARADIGM (Innovative Medicines Initiative); 2020. Available from: https://imi-paradigm.eu/petoolbox/pe-in-ed-hta/ or Printable Tool

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

PATIENT BASED EVIDENCE
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

IMPACT of Patient Involvement in HTA
The IMPACT project of PCIG (more detail under Past Projects) used a survey questionnaire to collected stakeholder perspectives with patient involvement in HTA. The questionnaire is available here: Impact template

It can be used (adapted) for impact analysis by our members in their organisations or to report your own experiences of being involved as patient/carer/advocate or of having involved patients/carers/advocates.

Social Media Research / Social Media Analysis

Guidance on ethical and legal aspects related to Social Media Research / Social Media Analysis for health technology assessment: https://doi.org/10.1017/S0266462323000399 and General considerations on using social media research in health technology assessment: https://doi.org/10.1017/S0266462323002593

OTHER USEFUL RESOURCES
INAHTA Position Statement on Patient Involvement in HTA (the who, what, when, how and why)
GIN Public Toolkit: Guidelines International National Public Toolkit: Patient and public involvement in guidelines. Including consultation, participation, communication and a chapter on HTA tools
Experiences with Patient Involvement in HTA in Europe and resulting Good Practice Recommendations: 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 (noa CDA) 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

ARCHIVES
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.

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 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.

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

QUALITY STANDARDS FOR PATIENT INVOLVEMENT IN HTA
GENERAL HTA PROCESS
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.

FOR INDIVIDUAL HTAS
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.

WHAT CAN YOU DO TO SUPPORT THESE VALUES AND STANDARDS?
Endorse them Nominate an organization for ‘excellent effort’ to attain them

CONTACT US TO GET INVOLVED
Twitter @pcisg
Email pat.standards@btinternet.comht

The International Alliance of Patient Organizations (IAPO)
IAPO is a global alliance representing patients of many different nationalities across disease areas and promotes patient-centered 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
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 Organization (WHO): Universal health coverage

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 careers and patient organizations 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.

EUnetHTA
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. EUnetHTA has been successfully concludedand the results have informed the implementation of the European Union HTA regulation (HTA-R; https://eur-lex.europa.eu/eli/reg/2021/2282/oj/eng).

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.

Project #010/2

Aim: Encourage implementation & adoption of template worldwide by raising awareness & developing training & communication resources, pilots & by obtaining stakeholder feedback

SUBCOMMITTEE Leaders:  Miryah Morris (BMS), Jose Diaz (BMS), Antonella Cardone (Cancer Patients Europe); Members: Dr Grace Li-Ying Huang (HTA Center for Drug Evaluation, Taiwan), Fiona Pearce (ACE Agency for Care Effectiveness), Solène Jouan (European Patients Forum), Eva Maria Ruiz de Castilla (Latin America Patients Academy), Lavinia Magee (Lung Cancer Europe), Elisabeth Oehrlein (Applied Patient Experience), Hayley Andersen (BMS), Kawitha Helme (Novartis), Ramiro Gilardino , Shopova (Amgen), Tanja Podkonjak, Mark Reale (Takeda), Ansgar Hebborn (Roche), Martin Coombes (Consultant), Kate Morgan (Myeloma Patients Europe on Maternity Leave)

Further Information:

• Project Description
  • Project Proposal
• Status / Outputs
  • Coombes MA, Morgan K, Diaz J, Oehrlein EM, Andersen H, Gilardino R, Helme K, Pearce F, Cardone A. Plain Language Summaries Supporting Patient Involvement. Lessons and Guidance from HTAi Patients and Citizen Involvement Interest Group (PCIG). International Journal of Technology Assessment in Health Care. 2025 Jul 29;1–17. Available from: https://doi.org/10.1017/S0266462325100408
• Other Material
  • Plain language summaries of applications to HTA bodies for patient groups: Template | Overview
  • Guidance for industry | HTA bodies | Patient groups
  • Open Access Paper: Cook, N., Livingstone, H., Dickson, J., Taylor, L., Morgan, K., Coombes, M., . . . Liden, B. (2021). Development of an international template to support patient submissions in Health Technology Assessments. International Journal of Technology Assessment in Health Care, 37(1), E50. doi:10.1017/S0266462321000167
  • See PAST PROJECTS for Summary of Information for Patients project #003

Project #E002

Aim: This project proposes an approach where patient stakeholders across Europe input into the information needs at the beginning, middle and through to end of the JCA process. It addresses the lack of official opportunity to input into the selection of the PICO parameters and the definition of templates that facilitate patient involvement in the JCA process (e.g.: Plain Language Summary Information).

SUBCOMMITTEE Co-Leads: Antonella Cardone, Cancer Patients Europe (CPE) and Valentina Strammiello, European Patients Forum (EPF).

This project is in the starting phase.
We are looking for interested Sub-Committee members and for funding for the project activities. If you are interested, please contact the Technical Officer of PCIG or the Subcommittee Leaders.

Further Information:

• Project Description: This work aims to:
  • Provide a template approach for a patient-led, patient focused survey that can be adapted and applied across disease areas to gain patient and caregiver input into the selection of meaningful PICO parameters
  • Highlight any divergence between the PICO parameters selected by patient stakeholders compared to those selected via the official JCA HTA PICO survey
  • Through the pilot, in one disease area, the project aims to provide the evidence needed to generate informed discussions with the HTA Coordination Group on the usefulness and importance of a patient-led PICO survey as an input to future JCA processes
  • Assess the information needed for patient stakeholders to gain a meaningful understanding of the JCA Submission on a more equal level to other stakeholders, with a view to developing a template for a Plain Language Summary of the dossier submitted by the developer. This could be completed as a pilot alongside one or more JCA Submissions
  • Gather feedback on the Plain Language Summary of the JCA Report provided by the HTA Coordination Group and to offer recommendations on its use by Member States
  • To ensure transparency and good governance, the project aims to be led by patient stakeholders, with supporting roles from other stakeholders recruited to bring in expertise needed to ensure robust and meaningful outputs
  • Publication of the results from the survey of patients to inform PICO parameters will be submitted to a peer-reviewed journal to ensure that the process, design and outputs of the survey can drive meaningful debate within the HTA community as well as the patient community.
    • Project Proposal
• Status / Outputs
  • in initiation (2025)
• Other Material
  • NIL

Project #013[AP360]

Aim: .The aim of this co-designed project is to complete a landscape analysis to document existing patient involvement practices in HTA in the Asia Pacific and develop recommendations for supporting and strengthening patient involvement in the region.

This work aims to:

• Provide a living document of the status of patient involvement in HTA in the Asia Pacific region for anyone to access or link to via the HTAi website
• Support patient involvement in HTA in the Asia Pacific region by identifying actions to support and strengthen existing and new processes (including further actions for PCIG)
• Develop or strengthen networks across the region among those working in patient involvement in HTA

SUBCOMMITTEE co-leads: Fiona Pearce (ACE, Singapore); Ann Single (Patient Voice Initiative Australia & HTAi) . Members: Amy Moore (Abbvie, Asia Pacific), Sam Pearson (Abbvie, Australia), Jenny Zhang (House086, China), Nichola Oakenfull (Myeloma NZ), Barbara Horne (Myeloma NZ), Melanie Funk (Eczema Support Australia), Catherine Isaacs (CLL Advocates NZ), Sus SUBCOMMITTEE co-leads annah Morris (HTA consumer member, Australia), Jyoti Rauniyar (MSD NZ), Chris Munoz (HTA citizen representative, Philippines), Hiromi Todoroki (Japan Federation of Cancer Patient Groups and KIBOUNOKAI [gastric cancer organisation], Japan), Ping-Tee Tan (ACE, Singapore), Eric Liu (Taiwan Young Patient Association, Taiwan), Anke-Peggy Holtorf (Europe 360)

Further Information:

• Project Description
  • At a time when HTAi is evolving its strategy for a sustained regional presence in Asia Pacific (including the annual policy forum, regional meetings every second year, HTAsiaLink MOU and patient involvement webinars), and PCIG has strong Asia Pacific connections, there is an opportunity to address the need to better understand practice in this region and deepen PCIG’s value and connection to members in this region. Working with stakeholders in Asia Pacific, this project will address the objectives as outlined above.
    • Project Proposal
• Status / Outputs
  • Initiated in 2025. Questionnaire developed. First workshops for data collection completed
• Other Material
  • NIL

Project #0

Aim: .

Team Members: 

Further Information:

• Project Description
  • Project Proposal
• Status / Outputs
• Other Material
  • NIL

Aim: To maintain a discussion platform for patient, consumer or lay members of appraisal committees or other HTA functions, where they can exchange experiences and collaborate for developing resources (or strategies) that are useful for them or others in these roles.

The initiators: Chris Munoz (The Philippines), Susannah Morris (Australia), Robyn Manuel (New Zealand), Stella Obrien (UK)

Further Information:

HTA agencies have various ways of involving patients, citizens or consumers in their processes. Some may be directly involved in the appraisal or decision-making, while others may participate in other parts of the process. Often, there is lack of opportunity for peer exchange within a certain jurisdiction.

Therefore, the Patient Exchange Platform has ben initiated by a group of patient and consumer and patient representatives who are currently engaged in the HTA process in our respective countries, and we are interested in gathering others ‘like us’ to exchange experiences and practices. Former patient/consumer/citizen representatives are also welcome to join, too.

Exchanging experiences and insights will be invaluable as we explore ways in which patient representation can enhance the HTA process and quality. We reflect and develop ideas, which can also be shared with HTA agencies that have not yet integrated patient involvement into their processes.

We understand the importance of confidentiality in this work and will fully respect all confidentiality agreements binding patient/consumer/citizen representatives.

This project is led by patient and citizen members of PCIG who have been actively working within their respective HTA agencies. If you are interested in joining our discussions, please send a mail with your expression of interest (name / E-Mail / country / how you are or have been involved in HTA in your country and region) to the PCIG Coordinator or the Technical Officer of PCIG.

(Previous Project #004_LMIC)

Aim: Explore the current routes of patient involvement in LMICs. Collaborate with LMIC stakeholders to define LMIC-specific needs for patient involvement. Develop and adapt guidance and tools to support patient and citizen involvement in HTA in emerging economies.

Initiators: Jani Mueller (DC-IG), Anke-Peggy Holtorf (PCIG), Lauren Pretorius (Campaigning for Cancer/ Sth Africa)

Further Information:

• Project Description
  • Multi-stakeholder workshop with leading regional or local partners to foster participatory processes in Health Technology Assessment or healthcare decision-making and to develop concepts or processes that are suitable to the context and setting.
• Status / Outputs
  • Pilot workshops completed in South Africa (in collaboration with Campaigning for Cancer) and Malaysia (in collaboration with HTAsiaLink).
  • Concept workshops conducted at Annual Meetings of HTAi
  • Publications:
    • Holtorf AP, Mueller D, Sousa MSA, Pretorius L, Wijaya KE, Adeyemi S, Ankleshwaria D. Pilot approach to analyzing patient and citizen involvement in health technology assessment in four diverse low- and middle-income countries. International Journal of Technology Assessment in Health Care. 2021;37. Available from: https://doi.org/10.1017/S0266462320002263
    • Report Workshop 18 at HTAi AM 2024
• Other Material
  • NIL

Project #001
Aim: 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.

Leads: Hervé Nabarette (AFM-Téléthon, France)

Team Members: PCIG: Ann Single (Patient Voice Initiative, Australia), Isabelle Ganache (INESSS, Quebec), Jean-Claude K Dupont (APHP hospital, France)

• Project Description
  • Project Proposal
• Status & Outputs
  • Short Summary
  • Publication (open access): Nabarette H, Chastenay MH, Dupont JCK, Ganache I, Single ANV. Patient and citizen participation at the organizational level in health technology assessment: an exploratory study in five jurisdictions. International Journal of Technology Assessment in Health Care. 2023 ;39(1):e51. Available from: https://doi.org/10.1017/S0266462323000417
• Other Material
  • Closing Vignette
    

Project #002
Aim: Aid reflection on the impact and mechanisms of patient and citizen involvement in HTA by trialing the use of a template to capture different stakeholders’ perspectives and stories.

Leads: Aline Silveira Silva (Researcher/Patient Voices Network, Brazil/Canada) & Veronica Lopez Gousset (VLG Consulting, France)

Sub-Committee Members: Ann Single (Patient Voice Initiative, Australia), Anke Peggy Holtorf (Consultant, Switzerland), Marcus Simon (Shockwave Medical, Belgium), Ana Toledo Chavarri (SESCS, Spain), Valentina Strammiello (European Patients’ Forum, Europe), Elitsa Ivanova (Servier, Pharma)

• Project Description
  • Project Proposal
• Status & Outputs
  • The project is closed
  • Closing Vignette
• Other Material
  • Project Summary Presentation
  • Open Access Paper: Holtorf, A., Mueller, D., Sousa, M., Pretorius, L., Wijaya, K., Adeyemi, S., & Ankleshwaria, D. (2021). Pilot approach to analyzing patient and citizen involvement in health technology assessment in four diverse low- and middle-income countries. International Journal of Technology Assessment in Health Care, 37(1), E1. doi:10.1017/S0266462320002263

Project #011
Aim: 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, Australia) & Barry Liden (Edwards Lifesciences, USA))

Team Members: Eric Low (Eric Low Consulting, UK), Deborah Marshall (University of Calgary, Canada), Adrian Skelly (Novartis, Ireland), Barry Stein (Colorectal Cancer Canada), Alissa Hanna (Edwards Lifesciences, USA)

Further Information:

• Project Proposal
  • Project Description
• Status & Outputs
  • The project is closed
  • Closing Vignette
• Other Interim Material
  • HTA Surveys and Analysis
  • ‘Do Patients Preferences Influence HTA Decisions‘ – webinar broadcast on Nov 18, 2021
  • 4-Part Webinar Series
  • See PAST PROJECTS for Patient Preferences project #008

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).

Team Members: Jennifer Dickson/Lindsey Lockhart (SMC, Scotland), Jane Tsai (Formosa Cancer Foundation, Taiwan) Alissa Hanna (Edwards Life Sciences, USA), Li-Ying Huang (CDE/HTA, Taiwan), Annekatrin Krause (Patient Advocacy Novartis, Switzerland), Joey Mattingly (University of Maryland, USA), Yvette Venable (ICER, USA), Donna Walsh (EFNA).

Further information:

• Project Description
  • Project Proposal
• Project Outputs
  • Holtorf AP, Danyliv A, Huang LY, Venable Y, Hanna A, Krause A, Pierre M, Welsh D, Silva A., Lee SH, Mattingly J. Using social media research in health technology assessment: stakeholder perspectives and scoping review. International Journal of Technology Assessment in Health Care. 2023;39(1):e63. Available from: https://doi.org/10.1017/S0266462323002593
  • Holtorf AP, Danyliv A, Krause A, Hanna A, Venable Y, Mattingly TJ, Huang LY, Pierre M, Silva A, Walsh D. Ethical and legal considerations in social media research for health technology assessment: conclusions from a scoping review. International Journal of Technology Assessment in Health Care. 2023;39(1):e62. Available from: https://doi.org/10.1017/S0266462323000399
• Other Material
  • PIRP Summary
  • PCIG-Bulletin
  • Closing Vignette: https://htai.org/wp-content/uploads/2025/09/009_PIRP_Project_FinalReport_PCIG_20240405.pdf

Project #011

Aim: 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)

Team Members: Dr Sally Wortley (PBAC), Clarice Moreira Portugal (CONITEC Brazil), Dr Grace Li-Ying Huang (HTA Center for Drug Evaluation, Taiwan), Elisabeth Oehrlein (National Health Council), Marjo Forsblum (Lung Cancer Europe), Zorana Maravic (Digestive Cancers Europe), Lise-Lott Eriksson (Blood Cancer Org Swe), Barry Liden (Edwards Lifesciences), Stephanie Manson/Pete Murphy (Novartis), Hayley Andersen (BMS), Franz Waibel (Consultant)

Further Information:

• Project Description
  • Project Proposal
• Current Status Report
  • 010 November Update
  • March 2022 Update
• Other Material
  • Plain language summaries of applications to HTA bodies for patient groups: Template | Overview
  • Guidance for industry | HTA bodies | Patient groups
  • Open Access Paper: Cook, N., Livingstone, H., Dickson, J., Taylor, L., Morgan, K., Coombes, M., . . . Liden, B. (2021). Development of an international template to support patient submissions in Health Technology Assessments. International Journal of Technology Assessment in Health Care, 37(1), E50. doi:10.1017/S0266462321000167
  • See PAST PROJECTS for Summary of Information for Patients project #003

Project #012

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

Team Members: Sarah Berglas (CADTH, Canada) David Chandler (lay member UK), Paula Orecklin (patient member, Canada), Ann Single (Patient Voice Initiative, Australia), Valentina Strammiello (European Patients Forum, Belgium), Dorota Zgodka (independent consultant.)

Further Information:

• Project Description
  • Project Proposal
• Status & Outputs
  • The project is closed – it serves as guidance for the ongoing participation of patients in the HTAi AM
  • Closing Vignette: https://htai.org/wp-content/uploads/2025/09/012_Patients-at-AM-Final-Report_PCIG2024.pdf
• Other Material
  • NIL

Project #E002_Europe360

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

Team Members: Neil Bertelsen, Anke-Peggy Holtorf

Further Information:

• Project Description
  • There is a gap in knowledge in how the various methods and processes for patient involvement in HTA are perceived by the stakeholders involved and a lack of knowledge in how differences in implementation of processes can affect the perceived effectiveness of the patient involvement. 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.
• Status & Outputs
  • The project is closed
  • Report
  • Publication: Holtorf AP, Bertelsen N, Jarke H, Dutarte M, Scalabrini S, Strammiello V. Stakeholder perspectives on the current status and potential barriers of patient involvement in health technology assessment (HTA) across Europe. International Journal of Technology Assessment in Health Care. 2024;40(1):e81. doi:10.1017/S0266462324004707
  • Closing Vignette:
• Other Material
  • NIL

Project support

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

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.

Typically, projects are conducted with the following flow:

For more information, contact the PCIG Project Coordinator or the Technical Officer