Research in Social and

Administrative Pharmacy j (2016) jj

Original Research

Incorporating patient perspectives in health technology

assessments and clinical practice guidelines
K. Hameen-Anttila, Ph.D.a,*, J. Komulainen, Ph.D.b, H. Enlund, Ph.D.a,
M. Makela, Ph.D., M.D.c, E. Makinen, M.D.c,
P. Rannanheimo, M.Sc. (Pharm.)a, R. Sipila, Ph.D.b
a
Finnish Medicines Agency Fimea, Finland
The Finnish Medical Society Duodecim, Finland
c
Finnish Oce for Health Technology Assessment, National Institute for Health and Welfare, Finland
b

Abstract
Background: Ensuring patient involvement in health technology assessments (HTAs) and clinical
practice guidelines (CPGs) is important. However, the goals and methods of such involvement are not
always clear.
Objectives: The aim of this study was to 1) discover ways to involve patients in HTA and CPG processes, 2)
describe challenges, and 3) nd ways of informing patients about HTAs and CPGs in Finland.
Methods: As part of a one-day seminar targeted at representatives of patient organizations (POs), 3, 1-h
focus group discussions were held (n 20, with 14 PO representatives). PO representatives included real
patients and health care professionals working in the organizations. The discussions were tape-recorded,
transcribed, and thematically analyzed.
Results: Focus group participants highlighted the importance of gathering patient views from a group of
patients, rather than individuals. Surveys through POs were the most frequently mentioned means of
gathering patients views. PO representatives reported interest in cooperating in HTA and CPG processes.
The most often mentioned challenges were nding appropriate representatives for the target group and
conveying information about HTAs and CPGs to patients. Multichannel communication was seen as
essential. Furthermore the information should be readable, comprehensible, tailored, reliable, reusable,
complementary, and timely.
Conclusions: Possible strategies to involve patients in HTA and CPG processes were incorporating patient
representatives in the CPG and HTA groups, oering timely possibility to participate, and ensuring
reporting with clear and unambiguous language. The main identied challenge was nding appropriate
representatives of the target group. The role of POs was seen as important particularly when informing the
patients.
2016 Elsevier Inc. All rights reserved.

Source of funding: This study was conducted with the resources of the authors organizations. No external funding was used.
Conflicts of interest: All authors are employed by one of the organizations who are responsible for conducting
health technology assessments or developing clinical practice guidelines in Finland.
* Corresponding author. P.O. Box 55, FI00034 FIMEA, Finland. Tel.: 358 295223341.
E-mail address: katri.hameen-anttila@mea. (K. Hameen-Anttila).
1551-7411/$ - see front matter 2016 Elsevier Inc. All rights reserved.
http://dx.doi.org/10.1016/j.sapharm.2015.12.005

Hameen-Anttila et al. / Research in Social and Administrative Pharmacy j (2016) 111

Keywords: Health technology assessment; Clinical practice guideline; Patient perspective; Qualitative research; Focus
group discussion; Finland

Introduction
Patients know what it is like to live with a
certain disease and to use medicines. In their daily
life, patients may experience issues such as minor
side eects, fear of side eects, or diculty in
administering medicine, resulting in poor adherence and even discontinuation of treatment.13
However, such issues may seem clinically or nancially irrelevant from the health professionals
point of view. Patient perspectives are thus needed
to complement the views of professionals and researchers; they oer valuable social, ethical and
organizational insights that may not be received
from elsewhere. Considering patient perspectives
when undertaking health technology assessments
(HTAs) or developing clinical practice guidelines
(CPGs) it thus appropriate.46 Successful public
participation in these processes should be judged
against four broad criteria: representativeness;
an open, inclusive and engaging process; access
to information that promotes improved understanding and knowledge among participants;
and legitimacy of the process.7
According to the Institute of Medicine, CPGs
are statements that include recommendations
intended to optimize patient care that are
informed by a systematic review of evidence and
an assessment of the benets and harms of
alternative care options.8 Some countries have
a long experience in involving patient perspectives
in guideline development, such as the National
Institute for Health and Care Excellence (NICE)
in England and Wales, and the Scottish Intercollegiate Guidelines Network (SIGN) in Scotland.9,10
NICE involves patient representatives throughout
the guideline development process, from scoping
to implementing the guideline.9 According to a
systematic review, however, guideline development is often suboptimal.11 One of several detected weaknesses was the lack of patient
involvement.
The International Network of Agencies for
Health Technology Assessment (INAHTA) describes HTA as a systematic evaluation of the
properties and eects of a health technology,
addressing the direct and intended eects of this
technology, as well as its indirect and unintended
consequences, and aimed mainly at informing

decision-making regarding health technologies.12

Although the importance of good links between
HTA processes and knowledge available from patient organizations (POs) has been recognized,13
very few European HTA agencies currently integrate patients perspectives in their work.14
Involving patients has become a more common
part in the processes of compiling both CPGs and
HTAs. Initiatives and guidelines have been developed to facilitate patient involvement. For example, Guidelines International Network (G-I-N)
has created a Toolkit on Patient and Public
Involvement in Guidelines to provide practical
support for obtaining patient perspectives and for
sharing experiences and best practice examples.15
Also INAHTA is currently piloting templates
for Patient Group Submissions that aim to oer
patient representatives a way to provide information to an HTA.16
In Finland, the Finnish Oce for Health
Technology Assessment (Finohta) at THL (National Institute for Health and Welfare) and the
Finnish Medicines Agency (Fimea) conduct and
mediate HTAs for national use: Fimea on pharmaceuticals and Finohta on all types of technologies. The Finnish Medical Society Duodecim
hosts national Current Care Guidelines, which
are independent, evidence-based clinical practice
guidelines targeted at Finnish health care. The
incorporation of patient perspectives in these
processes has varied in the past, and the organizations have now agreed to jointly consider
inviting patients more extensively to participate
in their work.
The aim of this study was to 1) identify
possible means of involving patients while undertaking HTAs and developing CPGs, 2) describe
what kind of challenges may exist in these processes, and 3) nd ways of informing patients
about the published HTAs and CPGs in Finland.

Methods
Participants
The data for this study were gathered in a oneday invitational seminar in May 2014 targeted at
representatives from POs. The seminar aimed at

Hameen-Anttila et al. / Research in Social and Administrative Pharmacy j (2016) 111

gaining insight into how processes of conducting

HTAs and CPGs could be improved to take into
consideration patient perspectives. The seminar
was organized by Finohta, Fimea and Duodecim.
Seminar invitations were sent to key patient or
health organizations in Finland (N 36). The organizers selected the target groups as a convenience sample to compile a variety of patient
groups. Altogether 29 representatives from 19 patient organizations and 6 other organizations
participated in the seminar (with more than one
person from some organizations) (Table 1). The
patient organizations chose freely their representatives, so some sent real patients and others
health care professionals working in the organization. The PO representatives were not asked
whether or not they were actual patients but
some mentioned it themselves.
The seminar began with three mini-lectures
presenting current HTA and CPG processes and
patient involvement in them. Second, a panel
discussion with three PO representatives brought
up important issues to address. Seminar

participants then participated in three parallel

focus groups, however, not all seminar participants stayed for group work. The data for this
study consist of the focus group discussions
(FGDs). Participants were divided to three groups
by the organizers so that as many dierent patient
groups as possible would be represented in each of
the groups. Representatives from other organizations were also divided into these three groups.
The three FGDs included 8, 6 and 6 participants (n 20), with 5, 5 and 4 patient organization representatives, respectively (Table 1). The
FGDs lasted for approximately 60 min and were
tape-recorded and transcribed verbatim for purpose of the analyses. Each FGD had two facilitators who followed an interview guide covering key
themes with probing questions (Appendix). The
interview guide was developed by the research
group.
FGD participants were informed that the
discussions will be used to develop CPG and
HTA practices in Finland, and that the data will
also be used for scientic purposes and published.

Table 1
Patient groups represented and the number of participants in the seminar and focus group discussions (FGD)
Participants in the one-day-seminar (n 29)

Participants in the FGDs (n 20)

Patient groupsb
Allergy and asthma (n 6)
Cancer (n 5)
Neurological diseases (n 4)
Diabetes (n 2)
Physical disabilities (n 1)
Eating disorders (n 1)

Group 1 (n 8, including 5 POa representatives)

Allergy and asthma (n 2)
Eating disorders (n 1)
Diabetes (n 1)
Neurological diseases (n 1)
Health care professionals (n 2)
National Supervisory Authority for Welfare and Health
(n 1)

Osteoporosis (n 1)
Heart diseases (n 1)
Psoriasis (n 1)
Other participants
Health care professionals (n 4)
National Supervisory Authority for Welfare and Health
(n 2)
Consumers Union of Finland (n 1)

Group 2 (n 6, including 5 POa representatives)

Cancer (n 4)
Heart diseases (n 1)
National Supervisory Authority for Welfare and Health
(n 1)
Group 3 (n 6, including 4 POa representatives)
Cancer (n 1)
Allergy and asthma (n 1)
Neurological diseases (n 1)
Physical disabilities (n 1)
Health care professionals (n 2)

Number of POs per patient groups: Allergy and asthma (n 4), Cancer (n 4), Neurological diseases (n 4), Diabetes (n 1).
a
PO patient organization.
b
Number of participants.

Hameen-Anttila et al. / Research in Social and Administrative Pharmacy j (2016) 111

All participants accepted tape-recording which

was regarded as informed consent. The anonymity
of participants has been secured and individual
participants cannot be identied from the report.
A qualitative approach was used to explore
patient perspectives and to elaborate topics that
were not identied beforehand. FGDs were
considered to be a more suitable method for this
study than questionnaires or individual interviews, since communication and interaction
among participants in groups may reveal dimensions of understanding that may remain untapped
by one-on-one interviews.17,18
Data analysis
The data were analyzed thematically.19 The
unit of analysis could be single words, sentences,
or a group of sentences. Furthermore, tabulations
were used both in the analysis and reporting.
Data analysis was conducted by two researchers who acted as facilitators in the FGDs
(KH-A, RS), a pharmacist and a physician. They
rst analyzed the data independently and interpretations were then compared. Discrepancies
were discussed and an agreement sought. On
one occasion, consensus on interpretation was
not found and a third opinion was sought (JK).
Quotes are used in the results to make it more
explicit how interpretations were made. Text in
the brackets within the quotes are additions from
the research group in order to make the quote
more clear and explicit due to translation.
Results
Ways to involve patients in HTA and CPG
processes
All three groups saw it as important that views
should be gathered from a group of patients
instead of hearing out just one or two individual
patients. This was explained by the fact that
experiences of a certain disease vary between
individuals. However, rare diseases were
mentioned as an exception where gathering patient views from a smaller group would be feasible
(participants in group 3).
I think that in these kinds of working groups the
!patientO organization expert can bring a wide
point of view from that patient group. Not the individual view of what happens to me now. And that is
why in these kinds of work groups I think that
specically the expertise of the !patientO organization should come along. Because it brings the

issue widely into the discussion. An individual patient is of course important. But what is more signicant as a whole, is to bring that broad vision !
to the working group discussionO. (Group 1,
participant not identied)

It was mentioned that POs have good channels

for gathering information from the patient
perspective (groups 1 and 2). One possible means
of gathering patient views were surveys distributed by the POs (groups 1, 2 and 3). Expert
patients and POs as such who hear stories of other
patients were mentioned as possible representatives of views from a larger patient population
(group 1). Participants suggested that surveys
should be concise and the questions relevant to
patients (groups 1 and 2).
I think that, at least our people !members of the
patient organizationO are willing to answer topics
related to treatments. Like an Internet (Webropol) survey through us !would be one possible
channelO. Tens of thousands of people come to
our website every month, and also on our Facebook, so we reach a big crowd in a brief time and
they !members of the patient organizationO are
willing !to answer questionsO especially to topics
related to treatments (). as long as they are clear
enough those questions and not too many open
questions. (Group 1, female participant 3, patient
organization representative)

Views on PO resources varied: this kind of

collaboration was considered so important that
POs could be willing to even conduct surveys and
analyze the data; on the other hand, it was noticed
POs might not have the resources for such work
(group 1). Some POs may not have resources to
participate actively; even so they should be oered
the possibility to get involved (one participant in
group 3).
The need to collect timely views from patients
as a basis for HTAs was brought up by one
participant in group 2. Group 3 thought that
patient involvement should be carried out in an
early phase of the assessment process and they
underlined the importance of targeting the request
for comments to the relevant PO or POs.
The need to involve patient representatives in
CPG or HTA working groups was the most
important means for involvement, as recognized
by groups 1 and 3.
M2: Yes, in the preparation phase when it starts to
roll, !the patients should be involved and askedO
do you want to participate and then even if it did
not work out !the patients would knowO that
such !assessmentO drafts exist. For example,

Hameen-Anttila et al. / Research in Social and Administrative Pharmacy j (2016) 111

one or two !patient representativesO would be
invited or try to get invited (Group 3, male participant 2, patient organization representative)
Interviewer: Yes. And specically in the phase
when there is a possibility to make an impact on
what there is !in the assessmentO and how it is
said there and not only just when almost ready,
take it or leave it.
M3: Yes. Like a White Paper, it is almost too late
to organize a hearing because everything has
already been agreed so. And the best would of
course be if they !patient representativesO would
be taken into the working group, to prepare.
(Group 3, male participant 3, patient organization
representative)

A comment was also made regarding the POs

as well as patients possible role in helping to write
the CPGs, so that they would be understandable
to chronically ill people (one participant in
group 1).
Challenges in the assessment processes
The groups discussed widely the challenges in
collecting patients views for the assessments.
Participants pointed out that it may be dicult
to nd appropriate persons from the target group
who would be capable of representing the larger
patient population and not just their own personal
experiences and views (groups 1 and 3). To
illustrate this, an example was given that the
experience of living with a disease may vary
even according to the time of day (one participant
in group 3).
Comments on whether or not some form of
education should be organized for patient representatives were diverse. Several potential groups
were identied such as patient trainers, peer
support patients, and patient representatives in
hospital ethics committees that could be utilized
without extra training because they are already
experienced in illustrating patient views (group 2).
A lack of resources to organize extensive training
was recognized in group 3. They also pointed out
that members of POs are a selected, active and
sometimes small group from the total patient
population of a particular disease (one participant
in group 3). Thus their views may misrepresent the
true nature of living with the disease. A participant in group 1 commented that education might
be needed to understand how the assessment is
based on scientic evidence. Altogether, the interpretation of these diverse comments is that when

patient experiences are gathered there is no need

for training. On the contrary, training is needed if
a patient representative works with the developers
e.g. as a member in an assessment group.
The challenge in conveying information about
CPGs and HTAs to patients was discussed widely
(Groups 1 and 2). Participants saw that womens
magazines, Internet discussion forums, health
food shops, TV programs and neighbors are
stronger opinion leaders than authorities. It was
also mentioned that people do not have the skills
to evaluate the reliability of information they
come across (two participants in group 2).
Ways of informing patients about the published
CPGs and HTAs
Participants identied a variety of communication channels for informing patients about
CPGs and HTAs (Table 2). Based on the discussion on the variety of dierent possible communication channels, all groups clearly viewed
multichannel communication as essential even
though this was explicitly mentioned only in
group 1. Furthermore, all groups thought that
the role of the POs is important in informing patients. Health care professionals were seen also as
important information sources for patients by all
groups. The role of the internet and social media
was also recognized but seen as a channel for
younger rather than for older people. Other relevant sources of information were web-based services,
mobile
applications,
newspapers,
pharmacies, call centers and information services,
guides and handbooks.
All three groups discussed the characteristics
of high quality information. They agreed that
information should be easily readable and
comprehensible, that is written in plain language.
It was identied that dierent care options should
be justied, and enough information given to the
patient in order to they can make informed
decisions (groups 1 and 2). Furthermore, it was
considered that information should be tailored to
an individual patients situation, should be available for later reference and should also be provided to relatives and support persons, not just to
patients themselves (groups 2 and 3).
Information should naturally be reliable
(group 2). Several members of group 2 represented cancer POs and they discussed widely how
the stage of the disease inuences information
needs. For example, when cancer has just been
diagnosed, it is important that not too much

Table 2
Communicating about the CPGs and HTAs preferred by the patients
Example quotea

Groups where
discussed

Using multiple communication

channels

Every possible channel should be used. Organizations are clearly vital. But then there is this social
media, when we earlier in the morning discussed this, that how this consumer perspective is like
in these channels, that how we really reach everybody.
(Group 1, participant not identied)
For example in patient organizations magazines, educational events, peer support events, in
rehabilitation .
(Group 1, participant not identied)

Group 1

Group 3
Female participant 1, patient organization representative: Yes, but it is also how the physician
communicates the topic !to the patientO and how that discussion goes. This
!patientphysicianO relationship is enormously important
Male participant 1, patient organization representative: It is also based on a person
Female participant 1, patient organization representative: So that one gets heard and both
sides !the physician and the patientO are understood by each other
There is this risk in social media, young people are involved there. But how about the older people?
They are not able to use the internet and they dont want to use it. There are a lot of people like
that. And how about the marginalized people?
(Group 1, female participant 5)

Group 1
Group 2
Group 3

Group 3
Female participant 3, patient organization representative: About these guidelines that on the other
hand the young people are really mobile phone people, but then again they usually have a
headset in their ears and not everybody has such a good ability to read. I mean that they would

Group 2
Group 3

Communicating through patient

organizations
- journal
- internet website
- educational event
- peer support event
- consultation service
- telephone service
- email service
- rehabilitation events
Health care professionals
- physician, specialist
- pharmacy
- nurses
- information services in
the clinics
Internet/social media
- discussion forum
- chat
- YouTube videos
- Mobile phone and tablet computer
applications
- social media a good way to reach
young people, however, may not
reach the elderly or the marginalized
Patient guides and leaets
- a good way to reach elderly
patients, however, not a

Group 1
Group 2
Group 3

Group 1
Group 3

Hameen-Anttila et al. / Research in Social and Administrative Pharmacy j (2016) 111

Themes

not read these kinds of long expository texts, so these patient guides could also be !availableO
in a recorded form
Female participant 1, patient organization representative: I had also written a similar note, but !in
a recorded formO for those who do not hear or .
Female participant 3, patient organization representative: also for visually impaired

Media
- newspaper,
- TV, e.g., medical TV programmes

Probably an average patient is not able to read for a long time the text targeted to professionals,
that one can browse it through but he will not be interested in it for too long, but I think that
then again the patient guides are those that they !the patientsO mainly read about their disease.
And on the other hand, for example, these kinds of TV physicians and others are for older people
nowadays, such that they are followed and listened to and !older peopleO are interested if
something related to their own disease happens to be discussed !in a TV showO.
(Group 3, female participant 3, patient organization representative)
Just this kind of traditional cartoon can be visual, where is something, short information and with a
picture, so .
(Group 3, male participant 3, patient organization representative)

Others
- Finnish health portal
Terveysportti
- cartoon
- short bulletin
- campaign
a

Text in the brackets are additions from the research group in order to make the quote more clear and explicit due to translation.

Group 1
Group 3

Group 2
Group 3

Hameen-Anttila et al. / Research in Social and Administrative Pharmacy j (2016) 111

good way to reach young

patients
- could be also in a recorded form
for patients who have low literacy
skills and for deaf and blind patients
- Braille-versions for blind patients
- To read and understand after meeting
the health care professional

Hameen-Anttila et al. / Research in Social and Administrative Pharmacy j (2016) 111

information is oered to the patient. Information

should be suitably timed and answer dierent
types of questions; it should be evidence-based
and appropriate. Moreover, information from
dierent sources should be complementary to
each other.
Just that !informationO starts to be sought then
when the issue aects !the patientO and then at
the same time a crisis is active. When a person,
we know, takes in only a certain amount of information. And secondly that information is needed,
a certain amount !at a timeO. And dierent information at dierent times.
.
We have to use these kinds of trustworthy !information sourcesO, you can give !to a patientO
that here is something to read for you, and I
think that it !the informationO really has to be
readable. Because the person digests that information in small pieces. She reads, doesnt understand
!at the rst timeO. Then when she goes through
something !with the illness or treatmentO, then
she reads it again, and understands it. (Group 2,
female participant 1, patient organization
representative)

It was considered important that information

from dierent sources is consistent (one participant in group 1); furthermore, it is good to state
whether the information is evidence-based or not
(another participant in group 1). It would be good
if the target group for the information was clear
(one participant in group 3). General instructions
for treatments were also brought up, since information from the physician quite often slips the
patients mind (another participant in group 3).
Furthermore, a desire was that dierent age
groups should be considered when formulating
information.
In summary, the results of this study follow the
criteria of successful public participation identied by Abelson et al,7 which were applied while
reecting on the results of the present study
(Fig. 1).
Discussion
This qualitative study found that patient organization representatives are interested in being
involved in guideline and health technology
assessment processes. The PO representatives
feel able to provide complementary information
to health care professionals or experts in the
process. Furthermore POs could oer good

channels to distribute information on CPGs and

HTAs to dierent patient groups.
Recent statements by the Institute of Medicine
and Guidelines International Network suggest
that patient and public involvement in CPG
development groups should be facilitated at least
at the time of formulating the clinical questions
and scoping of the CPG issues.8,20 Although
involvement in implementing CPGs is increasingly
acknowledged, only few guideline programs such
as NICE and SIGN utilize patient-mediated interventions at this stage.21,22 In all patient involvement a critical question is whether this
involvement can be based on an individual patient
view or whether a larger group of patients is
needed. This was discussed throughout the
FGDs in the present study, but no clear answer
was found. The general opinion was that a larger
group of patients is useful; however, the discussion during the FGDs focused on the practical difculties on how such a group could be gathered.
Patients can similarly be involved at dierent
stages of the HTA process, from the identication
of potential topics to dissemination of HTA
ndings and recommendations. At the moment,
there is a need for HTA agencies to involve and
integrate patient perspectives to a greater extent
into their work.14
Currently in Finland the methods mainly used
to elicit patient perspective are literature reviews
and inviting PO representatives to comment on
drafts of HTAs or CPGs. The present study
highlights the developers need and responsibility
to further clarify how to include the patient
perspective more eectively when undertaking
HTAs and developing CPGs. The scarce resources
that organizations can allocate to collaboration
between POs and assessment groups should be
used to improve patient involvement in a systematic, meaningful and ecient way. Such collaboration should move from consultation to
collaboration with patients and apply the four
criteria put forward by Abelson et al,7 which were
also recognized during the focus group discussions in this study (Fig. 1).
The major challenges identied in this study as
well as in previous studies23,24 include assuring the
representativeness of dierent patient groups.
Multiple means of involving patients in guideline
development that were identied in this study
are in line with a study conducted among guideline developers.22 The methods identied in both
studies included focus groups, patient members
in guideline development groups, web-based

Hameen-Anttila et al. / Research in Social and Administrative Pharmacy j (2016) 111

Representativeness

Targeting the
request for
comments to
relevant patient
organization(s)

Gathering patient
views from a
sufficiently large
group, not from
individual patients

The design of an open,

inclusive and engaging
process

Patient
organizations good
channels to gather
information, e.g.,
surveys

Involving patients in
an the early phase of
the process
Involving patient
representatives in
working groups

Access to information
in a way that promotes
improved
understanding and
knowledge among
participants
Multichannel
communication

Patient
organizations role in
informing patients

Patient organizations
and patients role in
helping to write the
reports so that they
would be
understandable

The legitimacy of the

process

Offering patient
organizations a
possibility to get
involved in a way
that is timely

Involving patients
may increase the
general
understanding of
patients own active
role in treatments,
support self-efficacy
and empowerment

Fig. 1. From consultation to collaboration with patients results of the study against four criteria developed by Abelson
et al 2002.

surveys, open consultations and written submissions by patient organizations. Furthermore, the
highlighted importance of recruiting patient members early in the process found in our study has
been identied in previous studies.22,25
The idea of training patient representatives
stimulated diverse thoughts in our focus groups.
Other studies stress that appropriate training and
support is needed for all participants involved in
guideline development to understand the elements
especially the scientic evidence base used in
guideline development and the process of
guideline development.25 For example, NICE
and SIGN train patient representatives in, for
example, how to make an eective contribution
to the development process, as well as in developing and using critical appraisal skills.10,26

Working with and for the patients, however,

they are in a position to represent patient groups.
There were other participants in the FGDs,
including health care professionals, which may
have inuenced the discussion and interaction in
the FGDs. However, an analysis of their involvement showed that removing their comments did
not signicantly change the main ndings of the
study. Even so, the results might not be generalizable to broader patient populations. The facilitators represent the HTA and CPG organizations in
Finland which also may have aected the discussions. The time allocated for the FGDs was only
1 h; the questions in the interview guide, however,
worked well and all the groups had time to discuss
all suggested topics. Longer FGDs might have
yielded deeper discussions on each topic.

Strengths and limitations

The focus group participants represented a
variety of patient groups and dierent diseases,
yielding a wide perspective on patient involvement
in HTA and GPC processes. Among the strengths
of the analysis were the tape-recording and
transcribing of the interviews, and the systematic
analysis of the data by two researchers.
Participants in this qualitative study represented a convenience sample of POs invited to a
one-day seminar that aimed to gain insight on
how processes of conducting HTAs and CPGs
could be developed to better accommodate patient perspectives. It is not known whether all the
PO representatives were patients themselves.

Conclusion
In this qualitative study, possible means identied for involving patients in the process of
compiling clinical practice guidelines and health
technology assessments were 1) incorporating patient representatives in CPG and HTA groups, 2)
ensuring that comments or participation in the
work are suitably scheduled, and 3) helping to
write CPGs and HTAs in a language that patients
can understand. Multichannel communication on
CPGs and HTAs was seen as essential and a wide
variety of communication channels were identied. The role of patient organizations was seen as
important in general, and particularly when it

10

Hameen-Anttila et al. / Research in Social and Administrative Pharmacy j (2016) 111

came to ensuring patients were informed. The

main challenge identied was the diculty in
identifying appropriate representatives of the
target group who would be capable of representing a larger patient population.
This qualitative study focused on identifying
means for involving patients in the processes of
compiling and informing patients about HTAs
and CPGs, which are still evolving in Finland. In
the future, when new patient involvement processes are agreed and utilized, it is important that
the outcomes of such participation would be
evaluated.

9.

10.

11.

12.

Acknowledgments
Patient representatives involved in the focus
group discussions of this study are gratefully
acknowledged.

13.

14.

Supplementary data
Supplementary data related to this article can
be
found
at
http://dx.doi.org/10.1016/
j.sapharm.2015.12.005.
References
1. Horne R, Weinman J. Patients beliefs about prescribed medicines and their role in adherence to treatment in chronic physical illness. J Psychosom Res
1999;47:555567.
2. Enlund H, Jokisalo E, Wallenius S, Korhonen M.
Patient-perceived problems, compliance, and the
outcome of hypertension treatment. Pharm World
Sci 2001;23:6064.
3. Townsend A, Hunt K, Wyke S. Managing multiple
morbidity in mid-life: a qualitative study of attitudes
to drug use. BMJ 2003;327:837842.
4. Sackett DL, Rosenburg WM, Gray JA, Haynes RB,
Richardson WS. Evidence based medicine: what it is
and what it isnt. BMJ 1996;312:172.
5. Straus SE, Richardson WS, Glasziou P, Haynes RB.
Evidence-based medicine: how to practice and teach
EBM. 3rd ed. London: Churchill Livingstone; 2005.
6. Facey K, Boivin A, Gracia J, et al. Patients perspectives in health technology assessment: a route to
robust evidence and fair deliberation. Int J Technol
Assess Health Care 2010;26:334340.
7. Abelson J, Forest P-G, Eyles J, Smith P, Martin E,
Gauvin F-P. Obtaining public input for healthsystems decision making: past experiences and future
prospects. Can Public Adm 2002;45:7097.
8. Graham R, Mancher M, Wolman DM, Greeneld S,
Steinberg E, eds. Committee on Standards for Developing Trustworthy Clinical Practice Guidelines.

15.

16.

17.

18.
19.

20.

21.

22.

23.

Institute of Medicine. Clinical Practice Guidelines

We Can Trust. USA: National Academy of Sciences;
2011.
NICE National Institute for Health and Care Excellence. The Guidelines Manual. http://www.nice.org.
uk/article/pmg6/chapter/1%20introduction; Accessed
28.08.15.
Scottish Intercollegiate Guidelines Network SIGN.
Patient involvement. http://sign.ac.uk/patients/index.html; Accessed 28.08.15.
Alonso-Coello P, Irfan A, Sola I, et al. The quality of
clinical practice guidelines over the last two decades:
a systematic review of guideline appraisal studies.
Qual Saf Health Care 2010;19:e58.
International Network of Agencies for Health Technology Assessment (INAHTA). Welcome to INAHTA; 2015, http://www.inahta.org/. Accessed 28.08.
15.
Moreira T. Understanding the role of patient organizations in health technology assessment. Health
Expect 2014;14. http://dx.doi.org/10.1111/hex.
12325. [Epub ahead of print].
European Patients Forum. Patient Involvement in
Health Technology Assessment in Europe. Results of
the EPF Survey; 2013, http://www.eu-patient.eu/
whatwedo/Initiatives/. Accessed 28.08.15.
Guidelines Network International. PUBLIC toolkit:
patient and public involvement in guidelines. http://
www.g-i-n.net/working-groups/gin-public/toolkit;
Accessed 28.08.15.
International Network of Agencies for Health Technology Assessment. Patient Submission Templates for
HTA Call for Piloting/Consultation; 2015, http://www.in
ahta.org/2014/07/patient-templates/. Accessed 28.08.15.
Kitzinger J. The methodology of focus groups: the
importance of interaction between research participants. Sociol Health Illn 1994;16:103121.
Kitzinger J. Qualitative research. Introducing focus
groups. BMJ 1995;311:299302.
Patton M. Qualitative Evaluation and Research
Methods. 2nd ed. Newbury Park: Sage Publications;
1990.
Qaseem A, Forland F, Macbeth F, Ollenschlager G,
Phillips S, van der Wees P, for the Board of Trustees
of the Guidelines International Network. Guidelines
international network: toward international standards for clinical practice guidelines. Ann Intern
Med 2012;156:525531.
Burgers JS, Grol R, Klazinga NS, Makela M, Zaat J,
for the AGREE Collaboration. Towards evidencebased clinical practice: an international survey of 18
clinical guideline programs. Int J Qual Health Care
2003;15:3145.
Boivin A, Currie K, Fervers B, et al, on behalf of G-I-N
PUBLIC. Patient and public involvement in clinical
guidelines: international experiences and future perspectives. Qual Saf Health Care 2010;19:e22.
Abelson J, Forest P-G, Eyles J, Casebeer A,
Mackean G, the Eective Public Consultation

Hameen-Anttila et al. / Research in Social and Administrative Pharmacy j (2016) 111

Project Team. Will it make a dierence if I show
up and share? A citizens perspective on improving
public involvement processes for health system decision-making. J Health Serv Res Policy 2004;9:
205212.
24. Gagnon MP, Desmartis M, Gagnon J, et al. Introducing the patients perspective in hospital health
technology assessment (HTA): the views of HTA
producers, hospital managers and patients. Health
Expect 2012;17:888900.

11

25. van Wersch A, Eccles M. Involvement of consumers

in the development of evidence based clinical guidelines: practical experiences from the North of England evidence based guideline development
programme. Qual Health Care 2001;10:1016.
26. NICE National Institute for health and care excellence. The Public Involvement Programme. http://
www.nice.org.uk/about/nice-communities/public-invol
vement/public-involvement-programme; Accessed 28.
08.15.