Supporting the Self Management of Obesity: The Role of Information and Communications Technologies (DH Reference No: 0200057)

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1









Supporting the Self Management of Obesity: The Role of
Information and Communications Technologies


(DH Reference No: 0200057)





Interim R
eport to Dep
artment of Health



July 2007









Social Informatics Research Unit

University of Brighton


2

Contents:


1

Projec
t title











3


2

Researchers engaged on the project








3


3

Statement of progress

3.1

Project structure and ‘flow’








3


3.2

Project timetable









4

3.3

Project teambuilding









5

3.4

Setting up information and
communications systems





5

3.5

Building partnerships in the local community






5

3.6

Meeting the advisory group








5

3.7

Securing NHS ethics approval








6

3.8

Design of research instruments

and participant information




6

3.8.1

Questionnair
e design








6

3
.9

Provider mapping exercise








8


4

Factors causing delay










9


5

Publications and presentations









9




3

1.
Project title: Supporting the Self Management of Obesity: The Role of Information and Communications
Technologi
es

I
n addition to the formal title of the project, which will be used on all documents and reports to the Dep
artment of
Health, the team has devised

two additional ways of referring to the project. For the purposes of NHS

ethics
approval (see section 3.8

b
elow), a ‘short’ title was required, which was to be used on all materials sent to or used
with research participants. For this

purpose
, the team came up with:
‘Information Technology and

Support for
Weight Management’
. In addition to length, this title h
as the added advantage of avoiding using the term ‘obesity’
which both the team and the ethics committee agreed could be problematic for recruitment.

For our own internal
use and with the
aim

of developing a project logo using this name, we

came up with th
e project title
:
‘Net.Weight’.



2.
Researchers engaged on the project

The project team is made up of 3 part
-
time Research Fellows
, a community IT consultant, two Professors
and a

full
-
time Project Administrator
.


3.
Statement of progress

The project has
many elements as represented in the flow diagram below.


3.1 Project structure and ‘flow’


Project stages
Database of
local health
info provision
Assets
and
needs
analysis
Participatory
learning
workshops
Provider
mapping
Learning
support
materials
Focus
groups
User
mapping
Consensus
event
New ICT tools
New information
design ideas
evaluation
outputs
KEY
Final
report
New
community
health ICT
initiatives
User Survey Report
Guidelines for good practice
in local health information
provision
New
community
health ICT
initiatives
Figure 1: Project flow diagram

3.2 Project timetable

The original timetable for the project is shown below:

STAGE

TASKS

MONTHS

OUTPUTS

Set up and
start of
-
Design of research instruments

-
Secure NHS ethics and research
1
-
4 (January

April
2007)

-
Ethics application

-
Research

4

provider

mapping

governance approval

-
Set up project website

-
Provider Mapping (desk
-
based research,
telephone interviews) begins


instruments
(
questionnaire, focus
group topic guides,
interview schedule)

-
Database of health
information providers
and provision in
weight management
field


-
Methodology paper

Mapping

-
Provider Mapping (desk
-
based research,
telephone interviews) continues



-
User Map
ping (recruitment, survey and
focus groups with users)

5
-
8 (May

August
2007)

-
Database of health
information providers
and provision in
weight management
field

-
User survey report

Assets and
needs analysis

-
Definition of existing assets and skills
needs,

start of design of participatory
learning workshops

9
-
12 (September
-
December 2007)

-
Learning support
materials for
workshops

Intervention

-
Design and run participatory learning
workshops


13
-
16 (January

April
2008)

-
Guidelines for good
practice in loca
l health
information provision

-
New ICT support
tools


Evaluation

-
Follow
-
up interviews and analysis

17
-
22 (May
-

October
2008)

-
Preliminary report for
use in Consensus
Event

Consensus
Event

-
Bring providers and users together, identify
project outcomes a
nd outputs, plan for
sustainability and transferability of project
concept/model

23 (November 2008)

-
Report from
consensus event to
be used to feed
directly into final
report write
-
up


Write up

Prepare final report

23
-
24 (November and
December 2008)

-
Fina
l Report, draft
academic papers


Th
e first 6 months of the project have involved the following activities
:


3.3
Project team building

With such a large and diverse group, regular and frequent full team meetings and sub
-
group meetings have been
crucial to
team building and effective working. Full team meetings are held on a monthly basis and sub
-
groups,

5

with responsibility for specific aspects of the

research
,

meet as necessary between these meetings
.
Team
meetings are used to keep everyone up to date of th
e progress of the project, to set goals and to report
achievements and challenges. Agendas and minutes are held on the project’s shared drive.


3.4
Setting up information and communications systems

The importance of good information and communication in a
project such as this cannot be over
-
stated. Thus,
in
addition to regular meetings,
a good deal of attention and time has been spent ensuring the right
computer
-
based
systems are in place to support this. The team has established the following systems:



a sh
ared drive for projects folders and documents



an online discussion group




a shared endnote (referencing system) library



a s
h
a
red ‘bookmarking’

system

for web
-
based resources using the del.icio.us tool


The project website
is being
developed alongside the
tool for managing the data collected for the ‘provider
mapping’ exercise’ (see
section 3.9
below). A link to the project website has been added to the website of the
Social Informatics Research Unit (SIRU), headed up by Pro
fessor Flis Henwood (see
http://www.brighton.ac.uk/cmis/research/groups/siru/

)
.


3.5
Building partnerships in the local community

At the project proposal stage, the project had the support of a ‘
Partners’ Group
’ made u
p of health and information
providers worki
ng across the city. The
Partners’ Group

has expanded and been strengthened over the first 6
months of the project by means of two
Partners’ Group

meetings and a series of bi
-
lateral meetings between
members of the

research team and the partner or partners most relevant to that researcher’s work on the project.
The
Partners’ Group

has

been involved, specifically, in the design of the questionnaire and focus group topic
guides for use in the user survey. They have al
so provided important contributions to the debate about
recruitment and how best to reach our target sample for this survey.


3.6
Meeting with Advisory Group

The project has a strong and committed Advisory group made up of local and national experts in the

fields of e
-
health, self
-
care and/or obesity. The Advisory Group met in early March to agree terms and hear a formal
introduction to the

project. 3 more full Advisory G
roup meetings will be held during the project’s duration, the last
of which may be comb
ined with the ‘Consensus Event’ to be held in the penultimate month of the project
(November 2008).



3.7

Securing NHS Ethics approval

The application for NHS approval went to the local Research Ethics Committee (REC) at the beginning of June,
following a
favourable outcome at the University’s Faculty of Health Research Ethics and Governance Committee
the month before. The NHS REC approved the application on June 7
th

2007 subject to receiving a complete
response to a small number of points they raised. Thes
e were dealt with immediately by the project director and
returned to the Committee Chair, who has the authority to consider this respo
nse on behalf of the full REC.
The

6

committee wish to see the fully revised questionnaire which, they accepted, would be f
inalized once focus groups
had been completed (these could not be undertaken before ethics approval was given). The project team fully
expected
,

and welcome
,

this condition.


3.8

De
sign of research instruments

and participant information

During the first
6 months of the project, all research instruments have been produced in draft form. This was
necessary for the NHS et
hics approval process and it is

recognized (by both the project team and the NHS ethics
committee) that some instruments
will

require furth
er work as they
are being
developed
,

incrementally, out of the
previous project stages.

Draft i
nstruments and supporting documentation designed and produced during this
period include:




questionnaire



topic guide for focus groups



pre and post workshop inter
view schedules



participant information sheet and consent form for focus groups



participant information sheet and consent form for participatory learning workshops



provider mapping checklist


3.8.1 Questionnaire design

The questionnaire, that forms a centra
l component of the ‘user survey’ aspect of the research,
is
designed to
understand more about
the information and communications practices of our sample population. One of the first
tasks was to agree our inclusion and exclusion criteria for the user surve
y. The inclusion criteria for the survey
have been defined as: ‘Residents of Brighton and Hove who are aged 16 or over, whose weight is above that
recommended for their height AND who are trying to do something about their weight’.
By defin
ing the inclusio
n
criteria in this way, we recognize that we are excluding those who are not currently ‘trying to do something about’
their weight
-

a group that
,

some may argue
,

is the most important group to engage in a project about self care.
However, the team, with ad
vice from both the
Partners’ Group

and Advisory Group, decided that
,

precisely
because we are interested in the information and communication practices (including use of technologies) that
support self care, we needed to target those who could be said to b
e already engaged in some form of self care
-

here, defined as ‘weight management’. We made the assumption that, within this sample, there will be sufficient
variation in terms of
engagement in different
types and levels of self care activities and that, in
deed, those
variations will be of interest to us in the research.


The questio
nnaire has been designed to address

the following research questions, organized by the research
objectives to which they pertain
:

1.

to map the ‘information landscapes’ of those inv
olved in the self management of obesity from
provider and user viewpoints



What are the existing assets (knowledge and skills) held by people seeking to self manage
obesity?



What are the information, advice and support needs of people seeking to self manag
e obesity?



What are the key sources of information and support currently accessed?


7



In what contexts are ICTs used in accessing such sources?


2.

to identify the opportunities and challenges posed by ICTs in the self management of obesity



What are the potenti
als and problems of ICT use in the self management of obesity?



What inhibits the effective use of information and ICTs in these contexts?


3.

to identify the specific IT, information and health literacy skills and needs of those seeking to make
use of ICTs in

this context



What learning and skills needs are identified by those seeking to use ICTs to support them in
the self management of obesity?



How far are engagement in obesity self management and use of ICTs differentiated by socio
-
economic status, gender, e
thnicity and age?


To this end, the questionnaire was designed with five main sections which cover the following aspects of
weight management:


1.

General health and weight issues

2.

Self care activities (weight goals, actions, importance given to weight manage
ment, c
onfidence in
weight management)

3.

S
ources and uses of i
nformation
, advice and

support for weight management

(sources
-

human,
print, electronic etc., understanding weight management advice and information)

4.

Use of information and communications technolo
gies

(range of devices and platforms, sites of
access and use, use generally and for

weight management, how ICT skills were acquired,
confidence in using ICTs
)

5.

Demographics


The process of questionnaire design has involved several stages, some yet to be co
mpleted. First, a search
for pre
-
validated questionnaires or sets of questions in all the above fields was made. This yielded some
interesting results and some helpful guidance on the wording of questions but no readily available pre
-
validated research ins
truments that could be used in its entirety and/or without amendment. Instead, we
selected relevant questions or questions from several large scale surveys of self
-
care/self
-
management,
weight management, information literacy and ICT usage and adapted the
m for the purposes of our project.
The first draft of the questionnaire was
then
commented upon by members of the Partner
s’ and Advisory
Groups and
revised before including with the NHS ethics committee application. It was made clear to the
ethics committe
e that the questionnaire would be revised again following both input from focus groups and
a pilot stage. The focus groups and pilot will take place in July and August and the revised draft will be
submitted to the ethics committee for final approval at th
e end of the summer.


3.9
Provider mapping exercise

One of the project outputs
was described in the proposal as
“a database of local health information providers and
provision in the weight management field”. Work on this deliverable will progress through
the life of the project, as

8

we learn more about what sources of information people in Brighton and Hove find useful. To date we have been
concentrating on two preliminary objectives:



talking to some of the key players in the provision of information and s
ervices in Brighton and Hove



investigating requirements for the database, including software option
s, and creating a prototype
web
site

Interviews with information providers

We have met and interviewed some of the main providers of health information in Bri
ghton and Hove to
establish what role they play in disseminating information relating specifically to weight management. These
have included the staff at the former Health Promotion Library (now merged with the Brighton and Sussex
University Hospitals NHS
Trust Library); the Patient Advice and Lia
i
son Service; and the
Active for Life

project, a joint initiative by

the City Council and the PCT. These interviews have been invaluable
,

not just in
establishing the role of these key information providers, but in

identifying a number of other organisations
who play an important role. In the course of this research we have collected a quantity of printed information
available from local centres, which will be logged on the database.

We have also carried out a syste
matic survey of resources on the internet that might be accessed by
people in Brighton and Hove looking for information and support in managing their weight. To do this we
have defined personas


credible profiles of “typical” searchers for information


a
nd scenarios of goal
-
directed information
-
seeking behaviour, a research method widely used in the human
-
computer interaction
field
1
.

Building the database of information providers

A key question has been to consider what form the “database” of information
providers and provision should
take and who it should be for. We have taken a decision to publish it as a web
-
based directory, rather than
creating a repository that can only be accessed by members of the project. In our view the database should
be more th
an a research tool, although it will be used in this way in the participatory learning workshops
later in the project. We feel that it is important to create a resource that is potentially sustainable after the
project ends.

We have therefore carried out
a survey of software being used for building community websites and are
currently building a prototype website in Drupal
2
, an open source content management system. This site will
be hosted and supported by the University of Brighton, but will be freely ac
cessible over the internet. It will
integrate the project website with the directory of information providers.





1

Cooper, A., (1999). The Inmates are Running the Asylum

2

See http://drupal.org/ the official website of
the Drupal development community


9

4.
Factors causing delay

T
wo (very different) factors are worth mentioning

here
. First,
a member of the team
had a close family
bereavement af
ter just a few week
s

in post. This caused some delay in both the setting up of systems to support
communication in the team and in team building, so important for effective and efficient progress.
This also
caused a short delay in getting materials ready f
or the NHS ethics application. Linked to this was a short delay
caused by the wait for a ‘slot’ in the NHS research ethics committee process.


We finally received ethics approval in mid June but had expected this would have been through by early May.
This

delay, together with the need to go back to the ethics committee for approval of the final questionnaire,
means that we are about 4
-
6 weeks behind our schedule for the user survey aspect of the project. This delay

will
impact on the

Autumn schedule as we
now expect to still be distributing and collecting questionnaires in
September and early October, well into our planned analysis stage. However
, with careful planning, we can
still
have undertaken the analysis of the questionnaire and focus group data by t
he end of 2007, thus putting us back
on target for finalis
ing the design and
undertaking the
delivery of the participatory learning workshops at the start
of our second full year (
scheduled for
January

April
2008).


5.
Publications and presentations

The f
ollowing presentations, introducing the project, have been made to date:


‘Health e
-
citizenship? Sociotechnical systems and self care’. Human Computer Technology Group seminar,
Sussex University, February 9
th

2007.


‘Supporting the self management of obesi
ty: The role of information and communication technologies’. Brighton
and Sussex Medical School, May 3
rd
, 2007.