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  • Norsk tittel - G-I-N Public Toolkit: Patient and Public Involvement in Guidelines.
  • Engelsk tittel -
  • Versjon - 2
  • Status -
  • IS-nr -
  • ISBN -
  • DOI -
  • Revisjonsdato - 01.09.2015
  • Neste revisjon -
  • Publikasjonsdato - 01.08.2012
  • Utløpsdato -
  • Utgiver(e) - G-I-N PUBLIC Steering Committee
  • Redaktør -
  • Publikasjonstype - Veiledere

Antoine Boivin is a practicing family physician and assistant professor at the department of family practice,
Université de Sherbrooke, Canada. He completed his PhD degree on patient and public involvement in
health care improvement at the Scientific Institute for Quality of Healthcare (the Netherlands). He cofounded
the Guideline International Network Patient and Public Involvement Working Group in 2007. He has
published a number of research articles and given courses and conferences on patient and public
involvement in guideline development and implementation.
Sarah Chalmers Page was programme manager for the Medical Technologies Evaluation Programme at the
National Institute for Health and Clinical Excellence (NICE) in the UK. Her work in public involvement started
as an assistant psychologist in local government, and has formed a common thread in her career through
general National Health Service (NHS) management and several years as a patient and public involvement
project manager in NICE, including leading training events for prospective patient and public members for
guidance development and for guidance developing managers and clinicians. She holds an MA in Psychology
and an MSc in Healthcare Leadership and Management.

Christopher J. Colvin has a PhD in socio-cultural anthropology from the University of Virginia and a Masters
in Public Health from the University of Cape Town (UCT) in epidemiology. He is currently an Associate
Professor in UCT’s School of Public Health and Family Medicine. He is also Head of the School’s Division of
Social and Behavioural Sciences. His research interests include HIV and masculinity; health activism and
community health governance; trauma, subjectivity and narrative; qualitative evidence synthesis; and the
interface between communities and health systems in the context of HIV/AIDS, TB and maternal and child

Jane Cowl is a senior public involvement adviser at NICE (National Institute for Health and Care Excellence)
in the UK. Jane leads the team that supports the involvement of patients and the public in the development
and implementation of NICE guidelines and quality standards. These guidelines and standards cover the
promotion of good health, prevention and treatment of illness, and social care support. Jane is involved in
sharing best practice internationally and is a member of G-I-N Public steering committee. Prior to joining
NICE, Jane ran health advocacy services, research projects and campaigns, and was the lead for consumer
issues in the national team set up by a UK government to help improve maternity services. She has a
master’s degree in conflict resolution, a BSc (Hons) in sociology from the London School of Economics, and a
postgraduate certificate in education.

Carrie M. Davino-Ramaya is a member of the G-I-N PUBLIC steering committee and was the toolkit’s primary
coordinator. She is a physician at Kaiser Permanente working as a practice leader for evidence-based
medicine (EBM), guidelines and medical technology assessment. She is a member of the Kaiser Permanente
Care Management Institute’s National Guideline Directors and Guideline Quality Group. After earning her
medical degree, Carrie gained international experience working with the United States Agency for
International Development (USAID) and the American International Health Alliance (AIHA) to introduce
primary care models which included guideline development and implementation in two Central Asia
republics (Turkmenistan and Tajikistan).

Jutta von Dincklage is currently the Head of Cancer Council Australia’s Clinical Guidelines Network. She has
been leading the transition from printed to wiki-based guidelines at Cancer Council Australia over the past
five years, including improving uptake and impact on clinical practice of the guidelines by piloting the
implementation of online education modules. She has presented and been involved in several publications
on the topic and is piloting and collaborating on strategies for living guidelines, including consumer and
public engagement. Jutta currently serves as Steering Group member of the G-I-N ANZ Regional Community
Group and the GIN 2016 Scientific Program Committee. Prior to joining Cancer Council Australia, Jutta was
involved in medical education and coordinated the piloting of the WHO Patient Safety Curriculum Guide for
Medical Schools in Sydney. Jutta von Dincklage has expertise in knowledge management, evidence-based
medicine and guideline development, online collaboration and solution design.

Karen Facey PhD is a Chartered Statistician, Honorary Member of the Faculty of Public Health and Fellow of
the Royal Society of Medicine. She has worked as a statistician for pharmaceutical companies and the UK
medicines regulatory agency. In 2000 she setup the first national health technology assessment (HTA)
Agency in Scotland and since 2003 has been an independent consultant. In 2005 she founded the HTAi
Interest Sub-Group for Patient/Citizen Involvement in HTA and now coordinates their Working Group on
Methods and Impact.

Javier Gracia is a physician, specialising in preventive medicine and public health. He is a senior researcher at
UETS (Health Technology Assessment Unit) in Madrid, Spain for projects related to health service research,
clinical practice guidelines and patient decision aids. He is director of the scientific committee of GuíaSalud,
the National Guideline Development Program in Spain. He is a steering committee member of G-I-N PUBLIC
and the Interest Sub-group for Patient and Citizen Involvement with Health Technology Assessment
international (HTAi). He has published a number of research articles on patient and public involvement in
guideline development, HTA and patient decision aids.

Karen Graham has more than 10 years experience of involving patients and the public in health service
design and development and she is currently Patient Involvement Officer at the Scottish Intercollegiate
Guidelines Network (SIGN). Karen’s career in public involvement started within the voluntary sector where
she was responsible for engaging young people in the development of smoking cessation services within the
NHS. Karen joined SIGN in 2004 where she developed the patient/public involvement programme
significantly. Her work includes the development of patient versions of guidelines; the involvement of
patients in guideline implementation and dissemination activity; and sharing best practice at national and
international levels. Recently, she has contributed to the DECIDE project (
by developing, evaluating and testing strategies to present guideline information to
patients and the public.

Alix Johnson: As a Public Involvement Adviser at NICE (National Institute for Health and Care Excellence) in
the UK for over 7 years, Alix Johnson supported the involvement of patients and the public in the
development and implementation of clinical, public health and social care guidelines. During this time Alix
advised colleagues how to ensure the perspectives of children, young people and other under-represented
groups were incorporated into guidelines. During her career Alix has worked with patients and the public at
a national epilepsy charity and as a public health practitioner promoting good sexual health in young people
and raising awareness of TB in inner London. Alix has a master’s degree in Public Health from the London
School of Hygiene and Tropical Medicine. Having left NICE in September 2015, she now works as a Health
Protection Specialist at Public Health England.

Nancy Huang is a clinician with over 20 years of experience in public health and guideline implementation.
She has worked in the academic and not-for-profit sectors to implement knowledge translation initiatives in
the primary care setting. From 2009 to 2011, she was the Director of the Guidelines Research Program for
the National Health and Medical Research Council (NHMRC) of Australia where she oversaw the review and
update of NHMRC’s ‘Standards for Guideline Development’. Currently, she is the national manager of
MedicineInsight, a new Australian initiative to establish a general practice post market surveillance database
for medicines to inform quality improvement programs.

Loes Knaapen is assistant professor in Sociology at the University of Ottawa, in Canada. Since 2008 she has
acted as Steering Committee member and Co-Chair (2010-2012) of G-I-N PUBLIC. Her primary research
domain is standardisation and knowledge production in medicine, focusing on how the principles and
politics of Evidence Based Medicine work out in practice. A secondary research interest is Patient and Public
Involvement (PPI) in health care, ranging from research design to individual clinical decisions to the
development of health care policy. She obtained her PhD in Sociology from McGill University (Montreal), for
which she conducted a multi-sited qualitative study of the production of clinical practice guidelines. During
subsequent postdoctoral fellowship at the Public Health Research Institute of l’Université de Montréal
(IRSPUM) she launched new research into patient and public involvement in the regulation of new
pharmaceuticals at the Food and Drug Administration (FDA) in the USA. At the University of Ottawa she
teaches courses in the Sociology of Health and Medicine as well as Qualitative Research Methods.

Marije Koelewijn-van Loon is a health scientist working as a post-doctoral researcher at the School for
Public Health and Primary Care (CAPHRI) at Maastricht University in the Netherlands. Marije has a master’s
degree in health promotion and education and received her PhD in 2010, investigating a nurse-led
intervention to involve patients in cardiovascular risk management in general practice. She was coordinator
of the 6th international conference on Shared Decision Making (held June 2011 in Maastricht), and currently
holds a Dutch Cancer Foundation fellowship for research on patient involvement in clinical decision-making.

Barbara Meredith is project manager for the Patient and Public Involvement Programme at the National
Institute for Health and Clinical Excellence (NICE) since 2003. Barbara has previously worked in health and
social care policy at Age Concern England, Age Concern London and the National Consumer Council. She
chaired the Patients Forum and the Department of Health working group on copying letters to patients. She
is the author of ‘The Community Care Handbook’ and joint author with Jane Lewis of ‘Daughters Who Care’,
and has a particular interest in the role of guidelines in helping to ensure patients and carers have a full and
informed say in their health and social care., +44 (0)20 7045 2053

Carol Sakala is director of Childbirth Connection programs at the National Partnership for Women &
Families, a USA not-for-profit organisation that promotes reproductive and maternal-newborn health and
rights; access to quality, affordable health care; and policies that help women and men meet the dual
demands of employment and family. Childbirth Connection works to improve the quality and value of
maternity care through consumer engagement and health system transformation. Carol brings perspectives
of childbearing women to policy and quality deliberations and works across the continuum of clinical
effectiveness activities, including systematic reviews, performance measures, clinical practice guidelines and
decision aids. She is a member of the G-I-N PUBLIC Working Group Steering Committee.

Corinna Schaefer is co-Chair of the Guidelines International Network for Patient and Public Involvement
Working Group (G-I-N PUBLIC) and coordinator of the first toolkit update. Trained and graduated in human
sciences, she is actually head of the departments for evidence based medicine/guidelines and patient
information/patient involvement at the German Agency for Quality in Medicine (ÄZQ), which she joined in
2006. She is responsible for the coordination of the German National Disease Management Guidelines
Program, where patient involvement and patient versions of evidence-based clinical practice guidelines are
mandatory. Her work also focuses on quality criteria and methodology of reliable patient information.

Tania Stafinski is Director of the Health Technology and Policy Unit in the School of Public Health, University
of Alberta, and teaches a graduate level course in HTA. She was previously a research associate at the Institute of Health Economics and the University of Alberta. She is co-PI for a multi-year health technology
assessment grant from Alberta Health, and is co-investigator of the Pharmaceutical Policy Research
Collaboration, funded by CIHR and Health Canada. She is also associate editor of BMC Health Services
Research, and a member of the steering committee of the Special Purpose Interest Group on Patient and
Citizen Involvement of Health Technology Assessment International (HTAi). Tania’s research interests include
HTA methods, innovative approaches to making health technology coverage decisions, and the role of social
values in priority-setting for healthcare.

Victoria Thomas is associate director of the Patient and Public Involvement Programme at NICE where she
has worked since 2001. Following a degree in Art History, Victoria has worked exclusively in the public and
voluntary sector, specialising, since 1995, in health care quality improvement activities and in patient and
public involvement. Victoria’s MSc, in Science and Society, concentrated on issues of science
communication, science and the public, and an evaluation of lay people’s engagement with evidence-based
health care initiatives. Victoria has an interest in shared decision-making, in particular the role of national
clinical guidelines as the basis of informed decision-making by both patient and clinician.
Sara Twaddle is a health services researcher and health economist by background. She is the Director of
Evidence at Healthcare Improvement Scotland. Her Directorate includes SIGN, the Scottish Medicines
Consortium and the Scottish Health Technologies Group, all of which involve active patient and public
involvement. From 2008–2010 Sara was the Chair of the Guidelines International Network.

Helen Tyrrell is a public partner with the Scottish Intercollegiate Guidelines Network (SIGN). Holding a
master’s degree in Public Health (MPH), Helen has worked in academic research, for the NHS and for many
years in the non-governmental organisation (NGO) sector. Here, she led the national umbrella body for
health-focused NGOs in Scotland, which has a brief, among others, to promote effective patient and public
involvement in health services. Recently Helen completed an enquiry for SIGN into patient and public
awareness of SIGN guidelines and of their value in health care improvement.

Shaun Treweek is a health services researcher and is active in the field of efficient trial design, particularly
pragmatic trial design, improved recruitment interventions for trials, the design and pre-trial testing of
complex interventions and the effective presentation of research evidence. He coordinated DECIDE
(, a 5-year, EC-funded project that aims to improve the way guideline
information is communicated to health professionals, patients and the public, policymakers and others. He is
leading a new initiative called Trial Forge ( that aims to be more systematic about
how we generate and use research evidence in making trial design, conduct, analysis and reporting

Trudy van der Weijden is full professor of Implementation of Clinical Practice Guidelines at the School for
Public Health and Primary Care (CAPHRI) at Maastricht University, department of General Practice
( She received her medical degree in 1989, is certified
as epidemiologist and defended her thesis ‘Implementation of the Cholesterol Clinical Practice Guideline in
General Practice’ in 1997, for which she received the CaRe Award 1997, the dissertation award of the
Netherlands School of Primary Care. In 2011 she chaired the International Conference on Shared Decision
Making in Maastricht. She has (co)authored over 180 publications in Pubmed.