Empowering patients: how to implement a diabetespassport in hospital care$

Rob Dijkstra*, Joze Braspenning, Richard GrolCentre for Quality of Care Research-229, University Medical Centre St. Radboud, P.O. Box 9101, 6500 HB Nijmegen, The Netherlands

Received 6 April 2001; received in revised form 10 July 2001; accepted 24 September 2001

Abstract

The purpose was to ascertain the views of patients with diabetes and patient care teams on the introduction of a recently developed

diabetes passport in order to plan effective implementation. A semi-qualitative study by eight semi-structured focus group discussions with

patient care teams and patients in four Dutch hospitals was organised. In total 29 patients participated (range five to nine per hospital).

Patient care teams ranged from four to six participants. Each team included at least one specialised diabetic nurse and an internist. Taped

views were transcribed and coded on the basis of a structured checklist. Various potential barriers to the implementation of the diabetes

passport were found. Although patients recognized the diabetes passport as a handy tool, most of them expected starting problems and little

co-operation from the internists; in this respect they rely more on the diabetes specialist nurse (DSN). Internists had mixed feelings about

the diabetes passport. Lack of motivation and lack of time were important perceived barriers. The specialised diabetes nurses had the

highest expectations of the diabetes passport and perceived themselves as those who would effectuate implementation. The main potential

barriers to effective implementation of the diabetes passport were found in setting the agenda of the passport and fitting it into the

organization of diabetes care. These barriers need to be considered when implementing the passport. The DSN could play an important part

in its implementation. # 2002 Elsevier Science Ireland Ltd. All rights reserved.

Keywords: Empowerment; Diabetes; Patient involvement; Barriers

1. Introduction

Involving patients as partners in their care is increasingly

recognized as a prerequisite for its effectiveness and effi-

ciency [1,2]. Provider based care with patients as consumers

should give way to a situation where patients become the co-

producers of their own health care [1,3,4]. In this perspective

the provider’s role would become more facilitating than

directing [5,6]. Empowerment and a collaborative patient

provider relationship are essential in a chronic disease such

as diabetes, where patients are responsible for the main

aspects of their daily diabetes management [4,7]. Improved

glycaemic control [8], greater patient satisfaction, better

quality of life, improved communication with health provi-

ders [9] and fewer limitations imposed by the disease may

thereby result [10].

In a situation where ineffective and provider centered

communication is still seen as a barrier to effective diabetes

treatment [11] the diabetes passport might fill a gap, because

it enables patients to evaluate the process and outcome

measures of their personal care in relation to recently

developed evidence based guidelines. Other than patient

held glucose diaries that are used by patients to document

glucose levels obtained from self monitoring, the diabetes

passports are designed to describe, record, and evaluate

medical screening results, see Fig. 1. The passport is an

indirect product of the 1989 St. Vincent declaration in which

the active partnership of medical services and patients was

put forward as a way of achieving diabetes treatment goals

[12]. More than sharing of information or decision making

[13]; the passport enables patients to follow closely the

monitoring of their disease over time and facilitates ‘‘shared

disease management’’. Although the introduction of patient

held booklets, mostly in preventive or chronic care, demon-

strated an increase in several, but not all, services and patient

outcomes [14–17] the question remains to what extent a

diabetes passport is accepted and used and would be effec-

tive in normal practice.

As an innovative attribute in diabetic care, much of the

success of the diabetes passport depends on how it is

perceived by health professionals and patients. In line

Patient Education and Counseling 47 (2002) 173–177

$ This study was made possible by a grant from The Netherlands

Ministry of Health, Welfare and Sport. No conflict of interest.* Corresponding author. Tel.: þ31-24-361640; fax: þ31-24-3540166.

E-mail address: r.dijkstra@hsv.kun.nl (R. Dijkstra).

0738-3991/02/$ – see front matter # 2002 Elsevier Science Ireland Ltd. All rights reserved.

PII: S 0 7 3 8 - 3 9 9 1 ( 0 1 ) 0 0 1 9 6 - 3

with Rogers’ ideas on innovation [18], both patients and

care teams should see the diabetes passport as a relative

advantage compared with former care, compatible with

existing values and needs and not too complex to under-

stand or use. This would be of assistance in the initiation

phase of the introduction where agenda setting and match-

ing of the innovation with the perceived problems take

place. The actual implementation would start with redefin-

ing and restructuring the innovation and organization,

followed by clarifying of the innovation’s role and routi-

nizing [18].

In recent years, several patient held booklets, meant to

record medical outcomes on chronic diseases like hyperten-

sion, cancer or diabetes were produced in different European

countries. The Dutch Diabetes Federation developed a pass-

port in 1998 and distribution was undertaken through the

pharmacies. However, one year later the passports appeared

to be infrequently used. These poor first results stressed the

importance of understanding the facilitating or inhibiting

factors in the implementation of this tool in diabetes care

[19], since it was not clear in which phase of the innovation

process the major barriers could be found. Beside a dis-

semination problem, we supposed that the ethical principles

of autonomy and patient partnership in diabetic care were in

conflict with daily practice, dominated by a balance in

expressed needs of patients and fixed routines of health

providers. A semi-qualitative study was set up to gain insight

into the factors contributing to success or failure in imple-

menting a diabetes passport. The research questions were:

What are the views of patients with diabetes and their health

providers on the effective implementation of the diabetes

passport? Which phases of the implementation process of

this innovation prevail with regard to the expected barriers

and facilitators?

2. Methods

2.1. Participants and setting

In four hospitals diabetes patient care teams and diabetic

patients were included for the study. The selection of the

hospitals—one University hospital, one large and two small

non teaching hospitals—was based on the expectation that

small and large hospitals and different levels of organization

of diabetes care could affect the expressed views. In each

hospital the diabetes specialist nurse (DSN) was asked to

invite about eight diabetic patients who were expected to

vary in their overall motivation for compliance to diabetic

treatment. The patient groups consisted of five to ten parti-

cipants; in total, 29 patients participated. In each care team at

least one internist and one DSN were present (Table 1).

Fig. 1. Administration page in the diabetes passport.

Table 1

Number of participants in eight focus group discussions in four hospitals

(H1–4)

Participants H1 H2 H3 H4 Total

Internists 2 1 1 2 6

DSNs 2 4 2 2 10

Dieticians 1 1 1 0 3

Podiatrist 0 0 1 0 1

Eye surgeon 0 0 1 0 1

Patients 7 9 8 5 29

174 R. Dijkstra et al. / Patient Education and Counseling 47 (2002) 173–177

2.2. Focus group discussion

A focus group discussion was preferred over individual

interviews, because more considered views were expected to

yield after group interaction [20,21], in line with policy

making in a multidisciplinary setting. The interviews were

organized separately for patient care teams and patient groups.

All group interviews were chaired by the same person and

commenced with the distribution of copies of the diabetes

passport and information about its contents and purpose,

especially to the group members who were not familiar with

it yet. A semi-structured discussion was then initiated by

asking: ‘‘What is your opinion of the initiative of the Diabetes

Federation in introducing the diabetes passport?’’ After col-

lectinggeneral remarksabout thepassport, thecontent, current

dissemination and the perceived importance, group members

were specifically asked to give their views on the possibilities

of its introduction in their hospital, to indicate who should be

responsible for the introduction, filling out and maintaining

the passport, and to discuss barriers and facilitators.

2.3. Analysis

The interviews were taped and transcribed. An 11-item

structured checklist based on the different steps in the

process of change was designed to cluster the views

[22,23] (Table 2). Two reviewers independently coded the

views expressed according to the structured checklist. A

value for k was calculated to check the consistency in the

interpretation of the results by two reviewers. It was found to

be 0.73. After learning the prevailing themes from the

interviews the checklist was adapted accordingly. To give

a rough indication of how often a particular remark was

made comments have been added in the Section 3. One is

used in the case of the personal view of one person; some,

several, or more to indicate that at least two persons and up

to half the group shared a view; most, or majority is used

when over half the group members shared a particular view.

3. Results

The results are ordered along the chapters in the checklist:

orientation, outline and content, acceptance and change [22].

Theremarks that most strongly represented the commonviews

expressed on each item were selected to appear as quotes.

3.1. Orientation

Only a few patients had received the diabetes passport

from their pharmacies. Most of them did not find the

intention of the diabetes passport clear. Health providers

were particularly critical of the fact that the diabetes pass-

port had been distributed by the pharmacies without invol-

ving diabetes care teams. They also had their doubts on most

pharmacies’ dissemination activities.

Patient ‘‘It looks like a combined glucose diary and

medication card’’.

DSN ‘‘Some pharmacies are active, some not . . . .

Patients whose drugs are brought to their homes

won’t get it at all’’.

3.2. Outline and content

Several patients saw the passport as a real passport: small,

handy, and easy to take with you when travelling. One DSN

indicated that it took some time to find out where to record

what. Several patients said that it was an advantage that the

passport contained more information than the blood glucose

diaries. One patient considered that giving reference values

was too rigid.

Patient ‘‘The passport is very comprehensive and that is

good’’.

Internist ‘‘The accent should be more on education and

less on recording’’.

Several patients and health personnel said that the pass-

ports would be too difficult for some patients to use. Some

internists added that people who understand it would not

need it, because they already record the main data, while for

those who did not yet register this booklet might be too

difficult.

Patient ‘‘There are words in it that I cannot even

pronounce, let alone understand’’.

DSN ‘‘It would be too difficult for more than half of

the patients’’.

3.3. Acceptance

Several patients said that the passport was very useful as a

source of information to others, especially when travelling

or outside surgery hours. Most patients saw the passport as a

method of getting more insight into their treatment. Others

said that the value would be greater for patients with unstable

Table 2

Structured checklist

Orientation

Being informed of the passport

Current dissemination

Outline and content

Appearance

Text and records

Difficulty

Acceptance

Motivation/use

Empowerment

Change

Person responsible for introduction

Person responsible for filling out

Barriers and facilitators to introduction

Barriers and facilitators to filling out

R. Dijkstra et al. / Patient Education and Counseling 47 (2002) 173–177 175

diabetes. Patients varied considerably in their motivation

towards the use of the diabetes passport. Some were glad to

see a handy tool, but most patients had mixed feelings. An

important negative argument was that the booklet reminded

them constantly of having diabetes. Some were afraid that

diabetes treatment would concentrate on target values rather

than on the quality of life, others were not interested in the

exact results. DSNs and dieticians appreciated the passport

as an aid in communication, since they had no ready access

to patient data. They also felt that most patients would

benefit from it. Internists explained that the passport did

not contribute anything new, although one internist saw the

benefit of having a checklist. Most internists considered the

passport a waste of time in their limited consultation hours,

but one saw it as his task to motivate patients to use the

passport. Only two patients and one DSN indicated that they

expected the passport to help patients ask their doctor

questions about their treatment.

Patient ‘‘I don’t need the figures; when the doctor says

it’s good, that’s enough for me’’.

Patient ‘‘The passport will make it easier for some

patients to ask for their blood pressure’’.

Internist ‘‘The passport is not part of the care we offer. We

already give the HbA1c results and now suddenly

this comes up’’.

DSN ‘‘We all want the patient to take more responsi-

bility; now we have an instrument to go in that

direction, so I think we should start using it’’.

3.4. Change

Although most patients agreed that both health profes-

sionals and patients should be responsible for bringing up

the subject, the DSN was mentioned most frequently as the

most suitable person to introduce the passport. One patient

suggested that for patients with newly diagnosed diabetes

the initiative should be with the health professional, while

patients who were already under treatment should come up

with the proposal themselves.

Patient ‘‘The hospital management should facilitate it in

the starting phase’’.

DSN ‘‘The DSN should fulfil the central role to its

introduction’’.

With regard to filling out the passport after its introduc-

tion, most patients and health professionals emphasized that

the patients themselves should be responsible for that, but

some added that co-operation is necessary because the

internist or DSN have all the data available.

Patient ‘‘It’s your own responsibility . . . but the DSN

should help those who can’t do it’’.

Internist ‘‘A patient said: You have to fill it out and when I

answered: No, you have to fill it out, I will give

you the data, he put it back in his pocket’’.

At the patient level, lack of information and knowledge

about the aims of the passport and its difficulties were

mentioned as important barriers to its introduction. Also,

a perceived negative attitude from health professionals was

expected to hinder introducing the passport to patients.

Some patients said that their own motivation was the main

success factor, but quite a few patients and health profes-

sionals felt that most patients would not be interested.

Patient ‘‘It does not motivate me at all and on top of that I

will definitely lose the passport’’.

DSN ‘‘It depends to a large extent on your own attitude

towards the patient; if that is not positive, they

will stop’’.

Concerning the filling out, some patients did not want to

spend valuable consultation time. At the DSN level, a

positive attitude on the part of DSNs and the fact that they

have more time available for each patient were mentioned as

the main facilitators by patients, internists, and the DSNs

themselves. However, some DSNs indicated that they would

have insufficient personnel if the team were to decide to start

introducing the passport. Also, poor access to patient data

for some DSNs and the fact that the DSN mostly saw only

part of the diabetic patients was expected to inhibit imple-

mentation. At the internist level, most patients and health

personnel said that the internist would not want to spend

precious time on introducing or filling out the passport.

Several internists indicated that it was not only the filling out

that would cost time, but also answering all the questions

from patients that would arise from it. They preferred to

spend their time on direct patient education, or on a physical

examination.

Patient ‘‘Just give me a copy of the laboratory results and

I will fill it out at home’’.

DSN ‘‘There wouldn’t be enough of us if we had to do

it’’.

4. Discussion

With regard to the consecutive stages of an innovation

[18], this study yields a compilation of potential barriers,

most of which refer to the first phases of the introduction.

Most patients seem to welcome the idea of a passport, but it

is surprising how many have low expectations about initiat-

ing the project within their own group. Although not being

familiar with the passport may play a role here, it can be

concluded that patients expect little co-operation from their

internists and rely more on the DSN. Compared to internists,

the DSNs have most positive ideas on its value, however, for

effective implementation they expect that they should have a

more central role within the organization of diabetes care. In

line with other studies the majority of the internists fear loss

of control over consultancy time [24] and content [25,26]

176 R. Dijkstra et al. / Patient Education and Counseling 47 (2002) 173–177

and have low expectations of any increase in patient invol-

vement, compared to the DSNs [27,28].

Although the need for change in diabetes management is

repeatedly expressed and introduction of a diabetes passport

could theoretically be of assistance, this study shows that

focusing on the first stages of implementation at the level of

each hospital probably can prevent disappointing results.

This process might be helped by giving more insight into the

gaps between expected and actual health care delivery and

better knowledge of health care expectations by patients and

providers (agenda setting). Furthermore, clear evidence of

its value in diabetic care would assist in matching the

diabetes passport to the perceived need for change. And

specific attention to the organization of diabetic care, includ-

ing the role of the DSN, would contribute in matching the

diabetes passport to the existing structures.

4.1. Practice implications

Implementation of a diabetes passport will not be effec-

tive if it takes place irrespective of the different kinds of

health care settings, providers and patients. Health care

providers that consider implementing a diabetes passport

should examine the gaps between their actual diabetic care

and the care as perceived by both providers and patients.

Consequently, they should decide whether this is the appro-

priate tool for each specific health care setting.

Acknowledgements

The authors would like to thank the patients and diabetes

patient care teams of UMC-St. Radboud Nijmegen, Bosch

Medicentrum S’Hertogenbosch, Ziekenhuis Zevenaar and

Medisch Centrum Molendael Baarn for their participation in

this study and A.F. Casparie for comments on the manuscript.

References

[1] Holman H, Lorig K. Patients as partners in managing chronic

disease. Br Med J 2000;320:526–7.

[2] Guadagnoli E, Ward P. Patient participation in decision making. Soc

Sci Med 1998;47:329–39.

[3] Anderson RM. Patient empowerment and the traditional medical

model: a case of irreconcilable differences? Diabetes Care 1995;

18:412–5.

[4] Etzwiler DD. Chronic care: a need in search of a system. Diabetes

Educ 1997;23:569–73.

[5] Feste C, Anderson RM. Empowerment from philosophy to practice.

Patient Educ Couns 1995;26:139–44.

[6] Wagner EH, Austin BT, Von Korff M. Improving outcomes in

chronic illness. Manage Care Q 1996;4:12–25.

[7] Glasgow RE, Anderson RM. In diabetes care, moving from com-

pliance to adherence is not enough. Diabetes Care 1999;22:2090–2.

[8] Anderson RM, Funnell MM, Butler PM, Arnold MS, et al. Patient

empowerment. Results of a randomised controlled trial. Diabetes

Care 1995;18:943–9.

[9] Kinmonth AL, Woodcock A, Griffin S, Speigel N, Campbell MJ.

Randomised controlled trial of patient centred care of diabetes in

general practice: impact on current well-being and future risk. Br

Med J 1998;317:1202–8.

[10] Greenfield S, Kaplan S, Ware JE. Expanding patient involvement in

care. Ann Intern Med 1985;102:520–8.

[11] Freeman J, Loewe R. Barriers to communication about diabetes

mellitus. J Fam Pract 2000;49:507–12.

[12] Diabetes care and research in Europe: the Saint Vincent declaration.

Diabetic Med. 7:1990;360.

[13] O’Connor A. Patient education in the year 2000: tailored decision

support, empowerment and mutual aid. Qual Health Care 1999;8:5.

[14] Giglio RJ, Papazian B. Acceptance an use of patient-carried health

records. Med Care 1986;24:1084–92.

[15] Turner RC, Waivers LE, O’Brien K. The effect of patient-carried

reminder cards on the performance of health maintenance measures.

Arch Intern Med 1990;150:645–7.

[16] Dickey LL, Pettiti D. A patient held minirecord to promote adult

preventive care. J Fam Pract 1992;24:457–63.

[17] van Wersch A, de Boer MF, Van der Does E, De Jong P, et al.

Continuity of information in cancer care: evaluation of a logbook. Pat

Educ Couns 1997;31:223–36.

[18] Rogers EM. Diffusion of Innovations, 4th Edition. New York: The

Free Press, 1995.

[19] Grol RTPM. Beliefs and evidence in changing clinical practice. Br

Med J 1997;315:418–21.

[20] Basch CE. Focus group interview: an under-utilized research

technique for improving theory and practice in health education.

Health Educ Q 1987;14:411–48.

[21] Powell RA. Methodology matters, focus groups. Int J Qual Health

Care 1996;8:499–504.

[22] Krueger RA. Analysing and Reporting Focus Group Results. New

York: Sage, 1998.

[23] Grol R. Implementing guidelines in general practice. Qual Health

Care 1992;1:184–91.

[24] Dijkstra RF, Braspenning JCC, Uiters E, van Ballegooie E, Grol

RTPM. Perceived barriers to the implementation of diabetes guide-

lines in hospitals in The Netherlands. Neth J Med 2000;56:80–5.

[25] Greco PJ, Eisenberg JM. Changing physicians’ practices. New Engl J

Med 1993;329:1271–4.

[26] Tunis SR, Hayward RSA, Wilson MC, Rubin HR, et al. Internists’

attitudes about clinical practice guidelines. Ann Intern Med

1994;120:956–63.

[27] Anderson RM, Donnely MB, Dedrick RF. The attitude of nurses,

dieticians and physicians towards diabetes. Diabetes Educ

1991;17:261–8.

[28] Morris DB. Developing a patient education program: overcoming

physician resistance. Diabetes Educ 1998;24:41–7.

R. Dijkstra et al. / Patient Education and Counseling 47 (2002) 173–177 177