Shared decision making and patient empowerment

shootceaselessUrban and Civil

Nov 16, 2013 (3 years and 6 months ago)



’ project


hared decision making

and patient empowerment

Maastricht, 23

CaRe consortium


chool for Public Health

and Primary Care



Institute for Health and Care Research.


NCEBP, Nijmegen Centre for Evidence Based Practice


NIVEL, Netherlands Institute for Health Services Research


General information

Main applicant (co
ordinating researcher)


Prof. C.P. (Onno) van Schayck

Scientific director

Maastricht University

PO Box 616

6200MD Maastricht


Brief summ

of re
search over
the last 5 years

Prof. Van Schayck is responsible for a large research programme on
asthma and COPD in primary care. He chairs a nation wide program

on patient
empowerment and shared
decision making

of COPD patients, funded by the Dutch
Asthma Founda
tion and the health insurer Achmea. He has (co
)authored more than 270
papers in international peer
reviewed journals, which include The New England Journal of
Medicine, The Lancet, British Medical Journal and Journal of the American Medical
Association. H
is field of expertise include:

Asthma and COPD in primary care and specifically in general practice

Smoking cessation research in public health

visibility, activities,
prices, etc.

Prof. Van Schayck is recognised as the most cited researcher in the world in the field of
asthma and COPD in general practice/primary care and has extensive influence on the
development of asthma and COPD research in primary care.
He was chairing the first

WHO primary care guidelines for asthma and COPD.
Since 2009 he is the scientific
director of the graduate school CAPHRI, which was under his leadership judged to be
‘excellent’ by an official external review committee in 2010. He received a TOP grant of
WO for investigating the efficacy
and mechanism
a nicotine

vaccine; 1997: KNAW

(comparable with Veni/Vidi award)
; Since 1990: 59 research grants (of which
21 of funds such as NWO and ZonMw). The total funding obtained up until 2011: 24
n Euros. Since 1988, he has been (co
)promoter of 46 PhD graduates, many of
which now have research positions and several have won various awards. Prof. Van
Schayck was appointed as honorary professor at the University of Edinburgh (UK) in
2009. He is a me
mber of the Board of Directors of the Research School CaRe and will be
the future scientific director of CaRe.

5 Key


Schayck, CP van, et al., Bronchodilator treatment in moderate asthma or chronic
bronchitis: continuous or on demand? A ran
domised controlled study.


Schayck, CP van, et al., Periodic treatment regimens with inhaled steroids in asthma
or chronic obstructive pulmonary disease. Is it possible? JAMA 1995;274(2):161

Schayck, CP van, et al., Detecting pati
ents at a high risk of developing chronic
obstructive pulmonary disease in general practice: cross sectional case finding
study. BMJ 2002;324:1370

Decramer, M, Rutten
van Mölken, M, Dekhuijzen, PNR, Troosters, T, Herwaarden, C
van, Pellegrino, R, Scha
yck, CP van,
, A. Effects of N
acetylcysteine on outcomes
in chronic obstructive pulmonary disease: a randomised placebo
controlled trial.
Lancet 2005;365:1552

Schayck, CP van, et al., Is there any role for allergen avoidance in the primary
tion of childhood asthma? J All Clin Immunol 2007; 119:1323

Applying university (contact



Prof. T. van der Weijden

CAPHRI Programme

’Implementation of Evidence

Maastricht University

PO Box 616

6200MD Maastricht



NWO subcommittee:
Biomedical and Life Sciences

NWO division:

ZonMw and MaGW



Prof. Bregje Onwuteaka

EMGO Programme ‘Quality of Care’

EMGO Institute for Health and Care Research

VU University Medical Center

Van der Boechorststraat 7

1081 BT Amsterdam


of research over
the last 5 years

Bregje Onwuteaka
Philipsen is professor of end
life research. She is program

director of the research programme ‘Quality of Care', one of the 4 research programmes
of the EMGO institute

The EMGO Institute as
well as the Quality of Care programme
was evaluated as excellent by an international review committee in 2010. She

leads the
research line ‘public health at the end of life’ of the department of public and
al health. End
life decision
making i
s an important theme within this
research line. This research was, as most end
life research originally predominantly
focused on the perspective of physicians. Example of this are the nationwide studies on
euthanasia and other end
life decision
g that take place every 5 years since
1990 and in which she is involved in 1995, 2001, 2005 and 2010 (since 2001 as project

Since the patient perspective needed more attention to further develop end
life research, she started expanding the focu
s of the research programme to the patient
perspective and the interaction between patients and health care professionals, both in
advance care planning and in actual care and treatment in the palliative phase. The start
of a large cohort of over 5000 peop
le with one or more of four of the most curr
advance directives in 2005
was the first important step towards achieving this.

visibility, activities,
prices, etc.

In 2002 Bregje Onwuteaka
Philipsen received a career award from the
Organisation for Scientific Research (NWO, Aspasia scheme) for research on ‘prudent
practice in medical decision
making concerning the end of life’. In 2008 she received a
career award from NWO (VICI scheme) for the research programme 'the pati
perspective in end
life care: personal dignity, preferences and participation'. The
EMGO programme ‘Quality of Care’ that she leads together with Prof. Danielle
Timmermans was judged to be ‘excellent’ by an official external review committee in
. She has substantial experience in project management of large multidisciplinary,
multicenter (inter)national studies. In 2001 she coordinated an FP5 European study on
life decision
making. Currently she is country lead of an FP7 Marie Curie Traini
Network on palliative care research (EURO IMPACT). She has over 130 int
publications in peer
reviewed journals among which, the New England Journal of
Medicine, the British Medical Journal, the Lancet, the Annals of Internal Medicine, and
Archives of Inter
nals Medicine.

5 Key


Pasman HRW, Rurup ML, Willems DL, Onwuteaka
Philipsen BD. The concept of
unbearable suffering in the context of euthanasia requests. Qualitative interviews
with patients and physicians about euthanasia

requests that were not granted.
British Medical Journal 2009 Nov 16;339:b4362.

Philipsen BD, van der Heide A, Koper D, Keij
Deerenberg I, Rietjens JA,
Rurup ML, Vrakking AM, Georges JJ, Muller MT, van der Wal G, van der Maas PJ.
Euthanasia and o
ther end
life decisions in the Netherlands in 1990, 1995, and
2001. Lancet. 2003 Aug 2;362(9381):395

Heide A van der, Onwuteaka
Philipsen BD, Rurup ML, Buiting HM, Delden JJM van,
de Wolf JE, Janssen AGJM, Pasman HRW, Rietjens JAC, Prins CJM
Deerenberg IM, Gevers JKM, Maas PJ van der, Maas G van der.
life practices
in the Netherlands under the Euthanasia act. The New England journal of medicine.

Philipsen BD, Fisher S, Cartwright C, Deliens L, Miccinesi

G, Norup M,
Nilstun T, Heide A van der, Wal G van der. Eureld Consortium. End
life decision

making in Europe and Australia: a physician survey. Archives of internal medicine

Meeussen K, Van den Block L, Echteld M, Bossuyt N, Bilsen J,
Van Casteren V,
Abarshi EA, Donker GA, Onwuteaka
Philipsen BD, Deliens L. Advance care planning
in Belgium and the Netherlands: a nationwide retrospective study via sentinel
networks of general practitioners. Journal of Pain and Symptom Management 2011;
: 565



Michel Wensing

Professor of implementation science, medical care researcher (PhD, Habil)

NCEBP, Nijmegen Centre for Evidence Based Practice

Institute for Quality of Health Care

Radboud University Nijmegen Medical


Postbus 9101

6500 HB Nijmegen


Brief summary
of research over
the last 5 years

The research of Prof. Wensing focuses on how to improve clinical practice, with a
lar focus on primary and ambulatory healthcare. It represents one of the themes
in the Nijmegen Centre for Evidence
Based Practice ( and the Department
IQ healthcare at Radboud University Nijmegen Medical Centre. The research is organised
in d
ifferent sub
programmes. The largest sub
programme concerns quality of chronic
illness care and preventive activities, particularly regarding cardiovascular diseases and
mental health problems. A particular focus is on organisation of primary care and on
nhancing patient self
management. A second sub
programme of research concerns
patient safety, particularly regarding pharmaceutical treatment. The other two sub

programmes concern out
hours primary care and performance measurement. The
studies concern
a range of primary care professions, family practice, dental practice,
pharmacy, clinical psychology, nursing, and allied health professions. The
implementation science group yearly delivers in 2
4 PhD theses and 20
30 scientific


visibility, activities,
prices, etc.

Michel Wensing, PhD, is medical care researcher and professor of Implementation
Science at Radboud University Nijmegen Medical Centre, Scientific Institute for Quality
of Healthcare, the Netherlands. He ha
s (co) authored more than 200 scientific papers
and supervised more than 2

Ph.D. theses. He is co
editor of the handbook
‘Implementation of innovations’ (with Grol, Eccles and Davies), which will have a new
edition in 2012. He has been involved as researc
her in many European studies. From
2011 on he is project coordinator of an international 4
year study concerning tailored
implementation interventions in chronic illness care. He is currently involved in 3 other
European projects

focused on primary care
. H
e is also associate editor of the journal
Implementation Science.

5 Key


Elwyn G, Buetow S, Hibbard J, Wensing M. Respecting the subjective: quality
measurement from the patient’s perspective. BMJ 2007;335:1021

Grol R, Berwick DM, Wensin
g M. On the trail of quality and safety in health care.
BMJ 2008;336:74

Wensing M, Bosch M, Grol R. Developing and selecting interventions for translating
knowledge to action. CMAJ 2010; 182(2): E85

Giesen P,
Smits M, Huibers L, Wensing M. Q
ty of after
hours primary care: the
Dutch solution. Ann Intern Med 2011;155:108

Szecsenyi J, Campbell S, Broge B, Laux G, Willms S, Wensing M, Goetz K.
Effectiveness of a quality
improvement program in improving quality of primary care
practices. CMAJ

2011; 183: E1326




Jozien Bensing

Honorary Research Fellow Netherlands Institute for Health Services Research (NIVEL)

Postbus 1568

3500 BN Utrecht

+31 30 2729686 (NIVEL)

of research over
the last 5 years

Financed by Jozien Bensings SPINOZA's Award, recently a communication lab has been
installed for experimental studies in which specific communication behaviours are
systematically varied and tested on several outco
me measures, including recall,
uncertainty, anxiety, adherence and satisfaction. Psychophysiological measures are
taken as well. Most projects are conducted in international networks, including (a.o.)
the Johns Hopkins University, Oslo University, the Univ
ersity of Liverpool, Verona
University, Ghent University and the University of Neuchatel.

Patient participation and patient involvement are studied, using theoretical and
methodological innovations, using combinations of qualitative and quantitative method
The most well
known example is the development of CQ
indices, which are initially
developed by NIVEL and are now widely used in Dutch health care (and elsewhere) to
assess patient preferences and patients assessments of the quality of care.
n, and in particular (shared) decision making are a major and relevant
part of these CQ
indices. NIVEL has translated and validated the Patient Activation
Measure (PAM), which gives an indication for the feasibility of shared decision making.
With the ris
ing prevalence of chronic diseases, (support for) self management has
become increasinglly important. Insight into the need for self management support is
an important aspect of patient
centred care.

The two research lines are (a.o.) integrated in the inte
rnational multicentre study
(GULiVER) on the quality of communication from a patient perspective, in which people
from four countries assessed the same set of videotaped consultations on the quality of
communication, and discussed their assessments in focu
sgroups. The results of this
study are reported in the international literature and are now tested in a EU
study on the quality of Primary Care which currently runs in 32 European countries

visibility, activities,


Jozien Bensing

Honorary Research Fellow at the Netherlands Institute for Health
Services Research (NIVEL) and
Full Professor of
Clinical Psychology and
Psychology at Utrecht University. She
was director of NIVEL (the Netherlands Institute
for Health Services Research) until
winner 2006, she is an
acknowledged expert in the application of psychological knowledge in health
settings. She supervised 26

theses and wrote
pproximately 350

She is a member of several National Advisory Councils on the interface between the
academic world and health care.
She was
of t
he founders and first President
of the
European Association for Communication in Health Care (
EACH), and is currently
member of the Board of Governors of the American Association for Communication in
Health Care. She is also a member of the Advisory Board of Patient Education and
Counseling and the editorial Board of Communication in Health Care.


Chair of the Board of the national research school CaRe


2008). She is
honorary member of the Netherlands Society of Sciences (Hollandsche Maatschappij van
Wetenschappen), the National Health Council (Gezondheidsraad), and in 2007 she
a member of the Royal Netherlands Academy of Sciences (KNAW).
In October
2003 Jozien Bensing became the first non
American to receive the international George
Engel Award for her outstanding research. In 2004 she was conferred the title Officer of
the Orde
r of Orange Nassau for her work in translating scientific knowledge into public.
In 2006 she receive
d the prestigious SPINOZA

5 Key


J.M. Bensing, P.F.M. Verhaak. Somatisation: a joint responsibility of doctor and
patient. Lancet : jaargang 367 (2006), nr 9509, p. 452

Bensing JM, Tromp F, van Dulmen S, van den Brink
Muinen A, Verheul W, Schellevis
Shifts in doctor
patient com
munication between 1986 and 2002: a study of
videotaped General Practice Consultations with hypertension patients. BMC Fam
Pract. 2006 Oct 25;7(1):62.

van Dulmen S, Sluijs E, van Dijk L, de Ridder D, Heerdink R, Bensing J Patient

adherence to medical treatment: a review of reviews. BMC Health Serv Res. 2007
Apr 17;7(1):55.

Pieterse, AH, van Dulmen, AM, Ausems, MGEM, Beemer FA, Bensing, JM.
Communication in cancer genetic counselling: does it reflect counselees' previsit
needs and p
references? Br J Cancer2005, 92(9):1671.

Deveugele M, Derese A, van den Brink
Muinen A, Bensing J, De Maeseneer J.
Consultation length in general practice: cross sectional study in six European
countries. British Medical Journal. 2002 Aug 31;325(7362):472



A.M. (

Dept. Medical Decision Making

Leiden University Medical Center J10

PO Box 9600

2300 RC Leiden, the Netherlands

Tel. +31

Fax +31



Brief summary
of research over
the last 5 years

Professor Stiggelbout is full professor in Medical Decision Making at the Leiden University
Medical Center, The Netherlands. Her research and teaching relate

to shared decision
making and risk communication, as well as to quality of life and outcome preference
(utility) assessment. From 2005
2011 she held a VIDI
award from the Innovational
Research Incentives Scheme of the Netherlands Organisation for Scientif
ic Research
(NWO) for research in utility assessment and the role of patient preferences in decision
making. She has received many grants from the Dutch Cancer Society as well as from
ZonMw, NWO, and other funding agencies on patient preference assessment,

empowerment and shared decision
making. She further received grants and supervised
research on quality of life and clinimetrics in various clinical fields (particularly
Parkinson’s disease and oncology) and on communication in breast cancer clinic

visibility, activities,
prices, etc.

President of the Society for Medical Decision Making (2011

Member of the Scientific Committee of the European meeting of the Society for
Medical Decision Making in Oslo, 2012, of the Executive & Scientific Committees of
the International Shared Decision Making meeting in Maastricht, 2011, and of the
Program & Sci
entific Committees of the International Shared Decision Making
meeting in Boston, 2009.

Member of the International Patient Decision Aids Standards Group (Consensus
group for Standards for Developing and Evaluating Patient Decision Aids

Associate Editor o
f the journal Medical Decision Making (2005

Fellowships for the Summer Institute on Informed Patient Choice (Boston MA, 2009
and Dartmouth NH, 2010).

Member and co

founder of the Netherlands Forum for Medical Decision Making, and
of the Dutch Platfo
rm for Shared Decision Making

Papers of her PhD
students received prizes from the Netherlands Society for
Technology Assessment in Health Care (NVTAG), the International Society for
Quality of Life Research, and the Decision Analysis Society of INFORMS (In
stitute for
Operations Research and the Management Sciences).

Advisory board member for the Encyclopedia of Medical Decision Making (Editor MW
Kattan, Sage Reference Project 2009

5 Key


Stiggelbout AM, Van der Weijden T, De Wit MPT, Frosch D,

Légaré F, Montori VM,
Trevena L, Elwyn G. Shared decision making: really putting patients at the centre of
health care. BMJ 2012 (in press)

Pieterse AH, Baas
Thijssen MC, Marijnen CA, Stiggelbout AM. Clinician and cancer
patient views on patient participa
tion in treatment decision
making: a quantitative
and qualitative exploration. Br J Cancer. 2008;99:875

Stiggelbout AM, De Vogel
Voogt E. Health
State Utilities: a Framework for Studying
the Gap between the Imagined and the Real. Value in Health

Marijnen CAM, Van de Velde CJH, Putter H, Van den Brink M, Maas CP, Martijn H,
Rutten HJ, Wiggers T, Klein Kranenbarg E, Leer JWH, Stiggelbout AM, for the

cooperative investigators. The impact of short
term preoperative radiotherapy on

Related Quality of Life and sexual functioning in primary rectal cancer: report
of a multicenter randomized trial J Clin Oncol 2005; 23:1847

Jansen SJT, Otten W, Stiggelbout AM. A Review of Determinants of Patients'
Preferences for Adjuvant Therapy in
Cancer. J Clin Oncol 2004; 22: 3181


CaRe R
esearch pro


Health care is changing, and so are the roles of health care professionals and patients.
Increasingly, users of care are asked to be partners in their care. There is more
awareness of the fact that orienting healthcare around the preferences and needs of
atients has the potential to improve patients’ satisfaction with their care as well as their
clinical outcomes. Patient
centred care also has been shown to reduce both under
and over
use of medical services. It improves patient adherence and reduces no
compliance, simply because patients are involved in the decision making process. There
is more attention for the communication process in the consultation room and the
standards, values and knowledge of both physicians and patients. We now face a new

of democratising knowledge, where patients will shift from passive (by non
adherence) to active involvement.

Patients should have knowledge of the character of their disease, the working of
medicines and how to use them. But it is also important for the
m to know why certain
health advices are given, which technologies are available, how to monitor their disease,
where they can find more information and what they should do and whom to contact
when something untoward happens. This way patients, or care rec
eivers, will become
the owner of their disease and will consult the health professionals less quickly. Patients
could in fact be seen as the manager of his/her own disease.

Patient ce
ntredness in itself is a
broad defined concept, but empowering patients
participate in decision making is one of the challenging aspects. We face the challenge to
provide the intellectual basis for a transition in healthcare utilisation that is traditionally
based on physician’s opinion, to a healthcare economy where the de
mand is also based
on evidence
based patient choice and shared decision making. The policy imperative
behind the transition to informed patient’s choice is found in the practice variation
phenomenon showing striking (geographic) variation in preference
sitive treatments
such as e.g. elective surgery. On top of this there is the ethical imperative that the
willingness of the adequately informed patient to consent with the proposed treatment
has to be checked, for each treatment proposed and for each uniqu
e individual.


CaRe consortium: researchers involved

Except for the applicants, mentioned in the general information,
some other top
researchers in this area from
of the
s will contribute to this
proposal. We mention a
few here:


Prof. Trudy van der Weijden,

, Maastricht

Trudy van der Weijden is professor in Implementation of Clinical Practice Guidelines
at the department of General Practice. She leads the CAPHRI research programme

'Implementation of evidence'. In

2010 she was awarded a ZonMW P
l for the
IMPALA project “Shared Decision Making in lifestyle counseling”.
She was chair of the
International Conference on Shared Decision Making in Maastricht 2011.
She is
visiting senior fellow at Nijmegen IQ Scientific

Institute for Quality of Health Care.
She is visiting professor at Hoge School Zuyd Heerlen.
She has (co
)authored over

international scientific papers in peer reviewed international journals, which
include the highest impact medical journals such as
British Medical Journal and
Journal American Medical Association. The total number of grants obtained add up to
more than 15 with a total sum of more than 3 million Euro.

research focuses on
knowledge transfer,

defining and describing quality of care,
and improving quality of
care through implementation of guidelines and innovations. Her rese
arch has a
specific focus on

patient perspective

and patient participation in medical decision
making where the tension is felt between rationalizing work (the app
lication of
guidelines) and patient
centered work (the preferences of the patient in the context
of the consultation).


Prof. Glyn Elwyn, visiting professor CAPHRI, from Cardiff University, UK.

Glyn Elwyn was appointed as a Distinguished Research Professor at Cardiff University
in May 2005 and appointed Research Director of the Department of Primary Care and
Public Health and Lead of the Clinical Epidemiology Interdisciplinary Research Group
) in March 2007. Formerly, he was the Foundation Chair of Primary Care at the
School of Medicine, Swansea University (2002
5). He has been nominated by the
Royal College of General Practitioners to be the UK delegate for European Association
of Quality Imp
rovement (EQUIP), WONCA Network. He is the author of 'Groups' (a
guide to working in small groups), which won a European Award in 2001 (Baxter
Prize) and he co
edited 'Evidence Based Patient Choice' (Oxford University Press,
He has (co)authored over

200 international peer reviewed papers. His main
research interests are: shared decision making, risk communication and patient
decision support technologies.


Prof Danielle Timmermans, EMGO
, Amsterdam

Danielle Timmermans, psychologist, is professor in Ri
sk Communication and Patient
Decision Making. She is programme director of the EMGO research program Quality
of Care and head of the research line Quality, Risk and Safety in Health Care. Her
research focus is on how patients and health consumers process
health (risk)
information and make decisions using theories and models from psychology. She has
supervised and supervises many interdisciplinary research projects focusing on risk
perception, risk communication and informed and shared decision making in di
health domains (e.g. prenatal screening, hereditary breast cancer, diabetes,
cardiovascular disorders, electromagnetic fields). Funding is provided by e.g. ZonMw,
KWF, NWO, Vumc, NutsOhra, Ministery of Health, FIMDM and totals over 3.4 millioen
o’s in addition to grants 3.5 million Euros as co
applicant. She published over 100
articles in peer reviewed journals.

She is a member of the Health Research Council and member of several national and
international committees of e.g. the Health Research
Council of the Netherlands, the
Netherlands Organization for Health Research and Development, World Health

She is a member of the Society for Medical Decision Making, the
Society for Judgment and Decision Making, the Netherlands Association o
Community Genetics, is a member and co
founder of the Netherlands Forum for
Medical Decision Making, and the Dutch Platform for Shared Decision Making. She is
a member and former president of the European Association for Decision Making.



Prof. Chris
van Weel, NCEBP
, Nijmegen

Professor Chris van Weel, general practitioner, and professor of general practice
since 1985, did develop the Nijmegen programme on effective primary care, which
formed the Nijmegen basis of the founding of the Netherlands School
of Primary Care
Research, CaRe, in 1995. This programme analysed the long
term outcome of
important health problems in general practice and the effectiveness of early
detection and prevention. He published more than 500 papers in peer reviewed
l journals and su
pervised 56 PhDs. In

2005 he was the most cited
scientist in the field of primary care.
Independent external reviewers have reviewed
the programme on effective primary care
on ten occasions since 1985, receiving high
marks on all occasions
. From 2007

Prof. van Weel

was president of the World
Organization of Family Doctors, Wonca.

In this framework he contributed to the
development of the measurement of individuals’ functional status capacity, the
COOP/WONCA Charts and their applicati
on in research on the outcome of disease
management. He was the co
founder of the Inter
national Network of Person Cent
Medicine (currently the Inter
national College of Person Cent
red Medicine), co
chair of
the Annual International G
eneva Conference of P
erson Cent
red Medicine, and sub
editor of the International J
ournal Person Cent
red Medicine.
In 2009, the programme
effective primary care integrated in 2010 in the Nijmegen Centre Evidence Based
edicine programme: Patient Cent
red Interventions. In this,
collaborations focus at the effects of health interventions on persons in their context.


Prof. Bas Bloem, Radboud Universiteit Nijmegen

Prof. Bas Bloem
a consultant neurologist at the Department of Neurology, Radboud
University Nijmeg
en Medical Centre. He received his MD degree (with honour) at
Leiden University Medical Centre in 1993. In 1994, he obtained his PhD degree in
Leiden, based on the thesis ‘Postural reflexes in Parkinson’s disease’. He was trained
as a neurologist between 1
2000, at Leiden University Medical Centre. He
received additional training as a movement disorders specialist during fellowships at
‘The Parkinson's Institute’, Sunneyvale, California (with Dr. J.W. Langston), and
more recently at the Institute of Neur
ology, Queen Square, London (with Prof. N.P.
Quinn and Prof. J.C. Rothwell). In 2002, he founded and became Medical Director of
the Parkinson Centre Nijmegen (ParC), which was recognised from 2005 onwards as
centre of excellence for Parkinson’s disease. He

is a board member of the Nijmegen
Motor Unit (head: Prof. S. Geurts), a fully equipped gait and balance laboratory. In
September 2008, he was appointed as Professor in Neurology, with movement
disorders as special area of interest. He is currently Preside
nt of the International
Society for Gait and Postural Research, and is on the editorial board for several
national and international journals, including the Journal of Parkinson's Disease.
Since 2009, he is a member of the European Section Executive Commit
tee of the
Movement Disorder Society. In 2009, he also joined the board of ZonMw (The
Netherlands Organisation for Health Research and Development). His current main
interest is in health care innovation, aiming to develop and scientifically evaluate
centred collaborative care.
For this purpose, Prof. Bloem co
ParkinsonNet, an award
winning and now nationwide healthcare network for patients
with Parkinson’s disease, which improves the quality of care, promotes patient
centeredness, and affor
ds an annual 20 million euro cost reduction. In addition, Prof.
Bloem co
MijnZorgnet (together with Prof.dr. Jan Kremer), a service
of web
based communities
for both patients and health professionals that
aims to facilitate patient
d collaborative care.
By the Dutch Ministry of Health,
Welfare and Sport he was awarded the title ‘zorgheld 2011’ (
National Healthcare
Hero 2011
Prof. Bloem has published over 3
0 publications, including more than
0 peer
reviewed papers.



van Dulmen, NIVEL, Utrecht

Sandra van Dulmen is research coordinator at NIVEL (Netherlands institute for
health services research) and professor in Communication in Healthcare at the
Radboud University Nijmegen Medical Cent
, Dept. of Primary and
Community Care.
Her research relates to the process, content and outcomes of provider
communication during face
face visits and telemedicine contacts. These
investigations involve a broad range of patient groups: routine general practice
s, elderly patients, demented patients, child
patients, patients with cancer,
type 2 and type 1 diabetes or hypertension, cardiac patients, patients with
gynaecological problems, and persons seeking cancer or prenatal genetic
counselling. These communicati
on studies are conducted in clinical, nursing and
outpatient settings (e.g. in general practice, p
ediatrics, gynaecology, pharmacy,
clinical genetics, oncology and internal medicine). The overall aim of her
communication studies is to unravel the complex
communication process and to
examine factors (e.g. doctor, patient or consultation characteristics, characteristics
of the health care system, disease
specific aspects) that influence the nature,
process, quality and outcome of the interaction. Specific to
pics of interest involve
medication adherence, patient participation and empowerment, self
and information recall. Another line of research is that of e
communication studies,
examples of which are cognitive behavioral interventions in IBS, fibr
omyalgia and
type 2 diabetes using smart phones, and patient participatory studies examining the
effects of pre
visit web
based, tailored interventions in oncology. She has received
many grants from the Dutch Cancer Society, ZonMw (The Netherlands Organisa
for Health Research and Development), Diabetes Fund, the Dutch Digestive
Foundation, the Health Insurers Innovation Foundation, and several other
organizations. Since 2001, she is the permanent secretary and co
founder of EACH
(European Association fo
r Communication in Healthcare), editorial board member of
Patient Education & Counselling and of the Intern
ational Journal for Person Cent
Medicine, and member of several (inter)national networks, e.g. the International
Network for Pe
red Medici
ne (INPCM), the Verona Network for sequential
analysis, and the network for eHealth in Behavio
ral Medicine (eHBM). In 1996, she
received the dissertation
award from CaRe (the Netherlands School of Primary Care
Research). In 2010, she received the 3rd pric
e in the competition for the Medical
Contact Communication Award for project VOICE on the process and outcomes of a
new educational model on communication about chemotherapy with older cancer
patients. In 2012, she won the 1st price in the competition for
the Medical Contact
Communication Award for the project E info geneca examining the effects of a web
based tailored preparatory intervention on the communication during genetic
counselling in hereditary breast cancer. Papers of her PhD
students received se
prizes: Volksgezondheidsprijs 2004, Prof dr Schreuder Dissertation award 2006, ASW
Thesis award 2006. She has published more than 100 international, peer


CaRe consortium: able to make a difference

The notion that shared decision making and patient empowerment does make a
difference in terms of patient satisfaction, patient adherence and compliance, is
to gain momentum. Research on patient centred care and (aspects of) shared decision
, often related to certain illnesses, is done in many parts of the world, especially
in Canada, the United States, the United Kingdom, Germany and the Netherlands.

However, what
distinguishes research in the Netherlands in this area from research done
in t
he other countries mentioned is, that in the Netherlands the focus is on the whole
process of shared decision making, including the communication process in the
consultation rooms
, and consequently,
linking this knowledge to
the concepts of
Evidence Based
and the dynamics of clinical practice guidelines

NIVEL (Netherlands institute for health services research) has a long and strong
research tradition in two fields relevant for this proposal: (a) provider
communication, and (b) patient p
articipation and empowerment. In many publications,
both research fields are integrated in studies on the quality of communication from a
patient perspective. The majority of studies on communication are based on a large
repository of 16,000 videotaped, re
life medical consultations collected over the past
35 years in primary and secondary care. This repository enables evaluations of policy
measures (e.g. care substitution, transition) and training outcome as well as secondary
analyses into the determinan
ts of (shared) decision
making. Apart from that, this
collection allows for unique empirical studies on shifts in doctor
patient communication
as well as patient involvement over the past decennia, which is pertinent to this

Another absolute nov
elty in the Netherlands is the empowerment of patients or users by
means of social media networks, such as
, which is being implemented in

(Prof. Bas Bloem).

is a service provider for both patients and
health professionals that aims to facilitate patient
centred collaborative care.
Nijmegen research group has a strong tradition in research on patient centred care and
is especially strong in implementation

Furthermore, extremely difficult topics, where patients experience many anxieties, such
as end
life decisions, are studied from the patient perspective by the Amsterdam
research group (EMGO). The interaction between patients and health care p
in the medical decision
making process is studied, both in advance care planning and in
actual care and treatment in the palliative phase. The EMGO research programme
quality of care focuses
amongst others

on the clinical situation, studying r
isk perception,
risk communication and informed and shared decision making in different health
domains (e.g. prenatal testing, cancer, diabetes, cardiovascular disorders,). As more
information is available for and offered to patients e.g. via internet, it

is increasingly
important to design information in such a way that patients understand the information
and are able to use it for their decision making. In particular, this is the topic of the
research of the EMGO institute who collaborates on this domain

with researchers from
national and international psychology departments. Setting the agenda for research is
another area where patient empowerment is important to make sure that research
questions relevant for patients are studied. The EMGO Institute has
many research
projects in which patients are involved in all phases of a research project.

The CAPHRI research group is

for the development and implementation of
patient participation, especially in general practice and the translation and interpretation
of evidence into clinical practice guidelines, which is preferably done at a national level
and by multidisciplinary tea
Also the integration of individual patient preferences in
clinical practice guidelines is an important subject for the group in Maastricht.

Research performed by Prof. Anne Stiggelbout
ocuses on patient preference
assessment, shared decision making,
and risk communication, as well as on quality of
life assessment. She is one of the most cited authors worldwide in utility assessment.

Prof. Stiggelbout is internationally extremely well connected. She is currently the
President of the international Soci
ety for Medical Decision Making

in the Netherlands, the

shared decision making
is approached from
an angle of integrated care, which is
rather unique.

Project proposal

Shared Decision Making (SDM) and Clinical Practice
Guidelines (CPG’s)

Clinical practice guidelines (CPGs) are important organisational and regulatory tools to
improve the quality and efficiency of health care. Systematic mapping of variation in
practice nevertheless shows a problematic
performance gap in health care,
illustrated by continuing unwarranted practice variation. It is caused by the dominance
of routines and personal preferences of clinicians in decision making, and by a lack of
involving patients in decision making.

Shared Decision Making (SDM), has the potential
to narrow the knowledge
performance gap. A new Cochrane review shows that SDM
supports patients in sifting the chaff from the wheat, when faced with the quality
standards and uncertainties as described in CP
Gs. After three decades of challenging
doctors to implement CPGs with disappointing results, the time is therefore now ripe to
minimise the gap by patient
mediated strategies such as implementation of SDM.

has different steps: sharing knowledge on opti
ons with patients, communicating the
risks and benefits of the options in a neutral way, discussing the patients’ situation and
values, helping patients to construct preferences based on the knowledge and values,
and finally sharing the decision making. So
called patient decision aids, which can be
used during or after the consultation, may support the patient in this task. Involving
patients in decision making, especially in preference

or option
sensitive situations, will
improve patient
centred care, and

diminish unwarranted practice variation

Overall aim of the S

CaRe project

The overall aim of the


project is to develop feasible strategies, embedded
in the CPGs infrastructure, to improve health care practice by involving patients in
sensitive decisions.



o study the value of different strategies to empower patients and professionals to
perform shared decision making.


How should information on health care options and health care pro
viders be
made accessible

and eas
y to use for decision making


ow should patients be facilitated to participate in decision making on the

(e.g. national research agenda), meso

(e.g. clinical practice
guidelines), or microlevel (e.g. decision making about their own health).


develop a framework for integrating SDM strategies such as patient decision aids
into CPGs.


To develop a strategy to implement SDM, based on training CPG users (clinicians,
nurses, etc) and decision aids embedded in CPGs.


To develop a core set of valid an
d acceptable performance indicators to assess the
level of SDM.


To evaluate the impact of the implementation strategy on the clinicians’ SDM



To develop recommendations for the implementation of best practices of SDM and
disseminate throughout
the Netherlands, and consequently throughout Europe
the rest of the world
(in cooperation with

partners, collaborating in a

Levels of care

We aim to design research projects on several levels of care in order to strengthen th
role of patients and increase participation of patients in decisions about their health and
care in order to improve the quality and efficiency of care.

The first level is the micro level. We aim to develop tools and procedures that will
improve the
communication and decision making of patients and doctors for treatment
decisions as well as general issues (e.g. about advanced care directi
ves). To achieve this
esearch is needed on the communication process and interaction of patients and
doctors, as w
ell as
how patients and doctors process and use health information. In
addition, the role of other health professionals (e.g. nurse practitioners) as well as
relatives of patients will be studied.

The second level is the meso level. Research will be a

e.g. (re)designing
guidelines to increase patient involvement in their care, and


an infrastructure
which enables patients and doctors to optimally share information and decisions.
Research is needed on e.g. how to involve patients in gu
idelines construction, on how
social media and the internet can b
e used to optimize patient cent
red care, and on the
best strategies to implement them.

The third level is the macro level. This is among others aimed at increasing patients

influence on th
e setting of the research agenda so that more research will be done that
will address patients

concerns. Ultimately, results of research should influence health
policy on the local and national level. In this respect it is important that the researchers
ave their part in translating study results into policy. In addition research is needed to
assess the effects of policies aimed at patient empowerment.

General approach, setting and participants

will be developed
to support implementation of SDM applying mixed methods
(literature study, qualitative methods, pilot studies, expert meetings and Delphi
procedures) and evaluat

in demonstration projects (effect and process evaluations in
different health care settings)
. All relevant stakeholders

will be

included: SDM experts,
CPG developers, patient decision aid developers, CPG users, and patient representatives.

Knowledge utilisation and expected impact

This project will advance the state of the art in the field of

research on patient
care, stimulate social innovation, and enhance patient empowerment.

Scientific impact:

The project will contribute to the scientific evidence base that scaffolds
the SDM principles and supports
to better organise
the conditions for
involving patients in medical decision making.
in various fields (SDM,
CPGs, MDM, HTA, health care communication) are involved, to guarantee that the
deliverables of the project address the varieties in health care practice
throughout the
country. International cooperation with scientific stakeholders from Europe and other
parts of the world will
advance cooperation within and outside Europe (USA, Ca)

knowledge dissemination in the international arena.


Tailor made impact

to society

(clinicians, patients, and policy makers). The evidence
generated will counter clinicians’ skepticism. This is needed because clinicians wish to
protect patients from anxiety, by not communicating risks and fostering a more
optimistic view of o
utcomes. SDM is not second nature to many clinicians and is not
taught in most curricula. Patients will in due time force clinicians to involve them. Next
generations of patients are familiar with social media, Google their symptoms and
medication on the w
eb, and connect easily to other patients to share knowledge. This
patient power gives us the unique opportunity to enhance clinicians’ performance, which
in turn will help patients to improve self
management and to avoid procedures they
would rather not ha
ve if they were well
informed. Policy makers may integrate the
performance indicators in the health care systems to measure and reward SDM.

Economic impact
: The costs to implement SDM will be kept to a minimum as it is
embedded within the existing infrast
ructure of development and implementation of
CPGs. SDM is expected to improve patient adherence by enhancing patient
negotiation on treatment selection. Longer elaboration leads to lower decisional conflict
and stronger patient attitudes towards tre
atment that are more predictive of adherence.
We expect unwarranted practice variation to decrease. Finally, SDM
will likely

lead to
better health outcomes, although the evidence is still limited.


The combination of expertise gathered in this

consortium is absolutely un
CaRe research
consortium, supplemented with Prof. Anne Stiggelbout from LUMC

(together named

, offers all the knowledge and expertise
needed to make a real change in shared decision making
and patient empowerment
both in terms

of research and implementation
. The consortium
will be able to combine

the theoretical and practical knowledge on shared decision making with implementation
will look

at the entire chain of care inside and ou
tside of hospital walls

offers a
multidisciplinary approach, looking at the subject from a sociological, psychological, bio
medical, clinical and ethical

point of view

and is very well connected both at the national
and the international level
. These

mixed together will
make a powerful
combination and could be the right ingredients for a
perfect recipe
engineer a real
breakthrough in th
e area of shared decision making and patient empowerment.

proposed project will have great scientific, socie
tal and economic impact.


Shared decision making, patient empowerment,
self management,
clinical practice
, practice variation

Institutional a
nd organis
ational embedding of the scientific research

The f

of the consortium are participating in the research school
CaRe: the Netherlands School of Primary Care Research.
CaRe was established as a
research school, and recognised by the Royal Netherlands Academy of Arts and
Sciences, in 1995. The participating in
stitutes are the School for Public Health and
Primary Care (CAPHRI) of Maastricht University

Medical Centre
, the Centre for Evidence
Based Practice (NCEBP) of the University Medical Centre Radboud in Nijmegen, the
Institute for Research in Extramural Medic
ine (EMGO) of the VU Medical Centre in

Amsterdam, and the Netherlands Institute for Health Services Research (NIVEL)
University Medical Centre


The mission of CaRe is the development of scientific evidence
based knowledge in the
field of primary

health care and the implementation of this knowledge as evidence
The mission of CaRe has its roots in medical, sociological



scientific research and theories, as well as in the practice of primary health care,
transmural c
are and public health. The domains of CaRe are unique among research
schools in the Netherlands.

The research activities of CaRe need to be placed in the context of extramural and
integrated health care, which is strongly developed in the Netherlands.
Within that
domain chronic and invalidating diseases increase, co
morbidity as well as complicated
treatment and care become more prevalent. Also the role of the patient and doctors is
changing, leading to new ways of decision making and information exchan
ge. To execute
scientific research in this context special methodologies and measurement instruments
are needed.

Quality of

official evaluations, the quality of the research school CaRe has always been
considered ‘excellent’ (5). Especially the PhD education was considered of very high
quality. At the moment there are

800 PhD students

in CaRe
, divided among the
four part
icipating partner institutes.

The international cooperat
ion of CaRe institutes is analys
ed in the bibliometric study,
which shows that CaRe, next to a national scientific cooperation profile, also has an
international scientific cooperation profile (23% of

its output) with a significantly high
impact score (CCP/FCSm = 2.15).

This impact score relates to the measured impact of a
research group to a worldwide field
specific reference value, indicating that publications
have been cited 115% more often than the

world average. This figure is one of the
highest figures of
research schools or institutes in the Netherlands and
clearly demonstrates the scientific excellence of the research school CaRe.

Recently, all CaRe partners have been evaluated by a
n independent international
external review committee, according to the SEP


was evaluated i
n December 2010 and was rated ‘
excellent’, receiving a
5, on a
scale of 1
5. The international External Review Committee decided that CAPHRI’s work is
‘at the forefront internationally and has an important and substantial scientific and
societal impact in the Public Health and Primary Care field. The School is

considered an
international leader’.

According to the ERC ‘The number of articles in top
international journals, such as Nature, Science, New England Journal of Medicine and the
Lancet is an astonishing achievement considering the research topics

was evaluated just before CAPHRI, in November 2010.

According to the self
evaluation documents and the site visits, the unanimous view of the EEC

s that
EMGO+ is an outstanding research institute. In terms of the volume and quality of

output, the number of completed PhD dissertations, the infrastructure and resources and
their management, and the research income generated by the institute as a whole, the
achievements of EMGO+ by the end of the assessment period have clearly been
ent on all counts as defined by the evaluation protocol, producing work of
international quality and influence


EMGO received a 5, on a scale of 1
5. The work of
the programme ‘Quality of Care’ received an overall score of 5 as wel
‘The EEC was

impressed with the achievements of the last years, especially with the end
research and the wo
rk performed within the patient
safety programme

programme parts combine high scientific quality with high societal relevance’.

was the inst
itute which was evaluated most recently.
The evaluation took place
in November 2011.
The official evaluation report is not available yet. However, in their
immediate feedback, the external review committee judged that NCEBP as a whole
a 5 (on a sc
ale from 1
5) and was of excellent quality.
The NCEBP programme
‘patient cent
red interventions

received a 5 on all aspects. NCEBP publishes
approximately 1200 papers per year, of which more than 25% scores in the top 10%.

Approximately 50 publications per

year have an impactfactor above 10.

research was reviewed in 2010, according to the Standard Evaluation Protocol
(SEP) by an international review committee. The committee concluded that NIVEL in the
period 2004
2009 performed very good to
excellent, both in terms of the quality of
arch and in terms of the organis
ation of the institute. Specifically, quality was
judged very good (4), productivity excellent (5), relevance excellent (5) and vitality very
good (4). NIVEL has a unique positi
on as a national institute for health services research
with a double mission: both scientific and societal. The combination of the two makes
the ambitions of this consortium in the area of implementation highly feasible. The
review committee was impressed

by NIVEL's continuous interactions with stakeholders,
not only in the phase of implementation but right from the phase of agenda setting on
and throughout the research process.