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Informatics Centre University of Chester

This is a review of the project carried out by the University of Chester, funded

by the NHS, to help PPGs use social media tools to improve their interaction

with patients. The University has been working closely with volunteer PPG

chairs to explore, develop and demonstrate the effective use of weblogs and

facebook pages. This note describes the learning and includes guidance to help

PPGs set up and manage their own social media initiatives.

FINAL version 15 March 2013

Lead author Dr Paul Bujac (p.bujac@chester.ac.uk)

Project Manager Adam Hughes (a.hughes@chester.ac.uk)

Informatics Centre

University of Chester

Parkgate Road

Chester CH1 4BJ

Social Media supporting

Patient Participation Groups

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Executive Summary

The Informatics Centre has carried out a project, sponsored by the local NHS, to understand how

social media tools might support the work of Patient Participation Groups (PPGs) by engaging a

wider audience. The Informatics Centre has worked with a small group of volunteer PPGs from

Wirral, as a joint project team, to explore and test out social media. The volunteers included both

PPG chairs and practice managers. These PPGs and the Informatics Centre have pioneered and

developed the concept of using a weblog linked to a facebook page to share information and seek

patient views. This ‘two strand’ approach balances the need to closely manage the social media tools

and yet to provide access to wider patient networks. Three Wirral PPGs are already using this

approach and work is in hand to extend this approach to other PPGs. The team believe this is a novel

example of PPGs using social media. Please see http://ppgiccreate.wordpress.com/about-2/ and visit

the active PPG weblogs.

This report describes the social media tools used and includes guides showing how to set up and run

the recommended tools.

Although the project team has been successful in developing a suitable approach and in

demonstrating how social media can be used, the team has also recognised the significant

challenges that have to be overcome in establishing its use. The rapid developments in technology

have made publishing very simple so people are now overwhelmed by the plethora of websites and

social media sites. Successful engagement between PPG and patients will only occur when patients

see a benefit in using these social media tools. This report explores these social media issues and

includes ideas for promoting the PPG initiatives.

The project team also noted several other learning points. These points include the need to keep any

new initiative simple, to recognise resource limitations (particularly IT), and to develop trust and

confidence in all concerned (practice staff and patients). Further details are described in this report.

This project has not looked explicitly at the effectiveness of the PPG concept. However this study has

noted significant limitations in the impact and operation of PPGs. In general, PPGs are not well

publicised, they are not fully representative of the patients, and their achievements are patchy. The

use of simple social media tools can give a coherence and sense of purpose to PPGs, as well as

providing a means to interact with a wider patient network. This approach will also help practice

staff to demonstrate that the practice is actively listening to their patients.

Further work, subject to additional funding, would be to publicise this social media initiative and to

support PPGs to help them better interact with patients. It is hoped there will also be an opportunity

to extend these ideas to other areas where social media might improve interaction between

organisations and the general public.

Acknowledgements

The Informatics Centre acknowledges the support from the local NHS, particularly the Wirral PCT,

and much appreciates the efforts and enthusiasm from three Wirral PPG chairs (Erica Allen, David

Gibson and Alec Wood).

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1. Introduction/Report Layout

This report describes the background to the PPG project, the work carried out by the PPG

workgroup, details of the social media tools used, the outcome and learning points.

Section Executive Summary 1 Introduction/Report Layout 2 Social Media and Interaction 2.1 Project background 2.2 Patient participation 2.3 Social Media 3 Project Work 4 Outcome and Learning 5 Further Work Appendices A1 Guide to setting up recommended social media tools A2 Guide to using social media tools A2.1 Managing the System A2.2 Communicating A2.3 Interacting A2.4 Privacy A2.5 Marketing A3 References/links A3.1 Examples of Social Media A3.2 Weblogs and facebook pages A3.3 Moderation guidelines A3.4 Interaction

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2. Social Media and Interaction

2.1 Project background

The Informatics Centre has been working with the NHS Cheshire, Warrington & Wirral (NHS CWW)

‘cluster’ to explore the use of social media to support the organisation’s work. The Centre was asked

to review relevant social media tools and note how these tools were already being used, to carry out

trials, and to capture and share good practice.

Several study areas were identified. These included:

Use of social media for internal communications within the new NHS organisations. This was

not pursued due to the organisational dynamics and to changes in NHS staff.

Alcohol services in Wirral (DAAT alcohol campaign). The Centre prepared a strategy based on

using social media to build on their new website as a focus for more local engagement.

Unfortunately organisation changes have also meant that this strategy has not been adopted. A

draft copy of this strategy is available on request.

Support to Wirral PPGs. This has been the major part of the project with significant work being

carried out to set up a small workgroup of volunteer PPG members and then develop dedicated

weblogs and facebook pages.

2.2 Patient Participation

Patient participation is a Department of Health Direct Enhanced Service initiative ‘to improve patient

participation and make GP practices more responsive to the needs and wishes of patients.

The Patient Participation DES aims to promote the proactive engagement of patients through the use

of effective Patient Reference Groups (PRGs) and to seek views from practice patients through the

use of a local patient survey.

The key requirements of the patient participation arrangements agreed by negotiators were that GP practices would:

develop a structure that gained views of patients and enabled the practice to obtain feedback from the practice population, e.g. PRG;

agree areas of priority with their PRG; collate patient views through the use of a patient survey; provide the PRG with an opportunity to discuss survey findings and reach agreement with the

PRG on changes to services; agree action plan with PRG and seek PRG agreement to implementing changes; publicise the actions taken and subsequent achievement.

For further details see (NHS Employers 1) and (NHs Employers 2).

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The DoH guidance refers to PRGs; these groups are bound by the formal DES rules. PPGs however

are grass roots organisations that respond to their needs of their patients and the practice

community. GP practices are encouraged to set up small groups (committees) consisting of

volunteer patients and practice staff (typically a GP and practice manager). The National Association

for Patient Participation (NAPP) has prepared a note describing the differences between PRGs and

PPGs (see http://www.napp.org.uk/PPGs%20and%20PRGs.pdf)

The Centre has carried out some limited work to understand how PPGs work. This study which was

mainly based on reviews of GP practice websites in Wirral and West Cheshire suggested this PPG

initiative was not fully effective. Subjective points included:

The general public didn’t know what PPGs were (straw poll)

Not all GP practices had PPGs

PPGs met infrequently and meetings were poorly attended

Approximately 50% of the PPGs were anonymous ie names were not published on the

practice websites so patients had no idea who was representing them

Lay PPG members were often retired and older than the practice patients and

representation of younger patients was minimal

PPGs found it difficult to interact with other patients

The issues discussed were limited eg focused on the appointment system

PPGs tended to work in isolation not necessarily picking up good practice from others (eg

NAPP, other PPGs, local groupings or relevant NHS organisations)

PPGs carried out limited marketing and did not use social media

This initial work suggested that some form of social media would be beneficial in improving

communications, within the PPG itself, between PPG and other patients, or even beyond the PPG.

2.3 Social Media

It was recognised that social media (SM) is rapidly developing with exceptional growth over the past

few years. SM is changing many aspects of people’s lives at both work and play. It is not the purpose

of this section to review the SM tools in detail but some relevant applications are noted. An

excellent short introduction to the use of SM is a note ‘Social media in youth health promotion’ by

the Government of South Australia (South Australia). Further useful background information can be

found in the Appendix A3.

SM tools can simply be considered as electronic noticeboards with different characteristics providing

a range of facilities to different participants.

The most promising and popular tools are:

Weblogs. These are essentially simple websites with the facilities to broadcast information,

to receive comments, to develop conversations and to carry out surveys. The weblog

manager (‘administrator’) has a significant degree of control in designing and operating the

weblog. However it is difficult to publicise the weblog and to reach wide audiences.

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Facebook pages. The facebook phenomenon means that most IT literate people register to

use this system and have ‘friends’. A facebook page is specific to an organisation rather than

an individual; personal data are effectively hidden. Facebook is particularly good at sharing

information and thoughts not just with friends but also with interested parties who ‘like’ the

page. The power of facebook to spread information relies on an expanding network of

friends who have more friends and so on. As the information on facebook grows, users need

to ensure suitable settings are chosen to prevent the accidental release of confidential

information.

Twitter. This system allows registered users to broadcast simple short text messages

(tweets) which can include links to other sites or photos or videos. These messages are

picked up by ‘followers’ who can re-broadcast these messages. As with facebook, the

potential to spread information, particularly gossip, can be significant.

As it is relatively easy to set up these social media tools, these are used widely commercially to

promote services and products, and by younger people to share thoughts and gossip. There are

examples (see Appendix A3) of organisations using facebook or twitter to interact with the public

but little data on the effectiveness of this approach.

The Centre carried out a survey of all the facebook pages that had been set up by PPGs. A simple

approach was taken; facebook was searched using key words ‘patient participation group (see

study)’. Some 22 facebook pages and one facebook group were found.

The following general observations were made:

Estimating there are of the order of 10000 GP practices, the overwhelming majority of practices

are not represented.

The majority of PPGs that do have facebook pages hardly use them. Some pages have never

been used; posting is infrequent. A measure of popularity is the number of ‘likes’. Typically most

pages had less than 10 likes; some none.

Posts were only made by the page owner (practice manager?) using the page as a noticeboard. It

appeared that the practice, rather than the PPG, supported the site.

Input from the public, whether as new posts or comments, was almost non-existent.

The only evidence of patient interaction was from the Ramsey Group PPG (IOM) page,

particularly a debate between the practice manager and patients over difficulties with the phone

system and booking appointments.

Several pages were anonymous with no reference to the associated GP practice.

Only PPG run weblog found was found. However no-one was leaving comments and the

associated facebook page was inactive.

There is a significant potential for SM to support PPGs. The tools are relatively simple and cheap to

set up, and SM provides an opportunity to reach a wider and younger network. There were concerns

expressed by some PPG members and practice staff about the effectiveness of SM to reach typical

GP practice patients and about resources and confidentiality. It was argued that the potential and

concerns could only be answered by carrying out a pilot project.

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3. Project Work

The original project plan envisaged trials to test out potential applications of SM. Following a

decision to concentrate on support for PPGs, a project programme was developed to:

Set up a small focus group of volunteers including PPG chairs and practice managers

Explore potential social media tools

Understand likely issues and challenges

Identify a preferred social media model

Support pioneer PPGs in developing this model

Learn from their experiences and capture good practice

Centre staff attended the Wirral PPG forum in Birkenhead (‘Sharing Good Practice’, 28/03/12) to

meet PPG members and gave a presentation to the second forum (‘Overview of changes in NHS’,

28/05/12). Several PPG chairs and NHS staff (practice managers) from some 7 Wirral GP practices

volunteered to help out with this project. These volunteers together with Centre members

essentially became the project team. The team met monthly during the second half 2012. To support

the project between formal meetings, a dedicated project weblog

http://ppgiccreate.wordpress.com/ was used, together with emails, to share ideas and progress, and

to record activities. A webmail service (ppg@iccreate.com now ppg@informaticscentre.co.uk) was

also set up so that Informatics Centre staff could read and reply to incoming mail.

The initial meetings focussed on understanding SM and its potential application. Several significant

challenges were noted. The main areas were:

An overly cautious attitude, caused probably by a lack of understanding both of SM and of

the role of PPGs, about the possible benefits and probable disadvantages of SM. The

paradox is that PPG members tend to be older and not necessarily IT confident, but younger

patients who are IT competent are not particularly interested in PPGs nor even visit GPs.

A serious concern that providing opportunities for patients to interact by posting or

commenting on public SM sites would result in abuse. Particular issues included the

potential loss of confidentiality and personal attacks on practice staff.

A need to clarify who owned and managed the PPG SM tools, and how these tools

integrated with existing practice websites.

A need to ensure that PPGs had the resources (time, budget and especially IT skills) required

to set up and maintain the SM systems.

A concern that many patients, particularly older or disadvantaged patients, may not be able

to access IT.

A concern over security and the vulnerability of internet based systems.

The project team considered the various SM tools. The task of the project team was to choose SM

tools which would best support a PPG and meet the recognised challenges. The preferred model

uses two tools (a ’two strand’ model of a dedicated weblog and a dedicated facebook page) to give a

balance of control and openness. The weblog would act as a ‘noticeboard’ and be the primary

channel for comment and dialogue. Facebook was chosen as it is well used by younger people. The

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use of twitter was considered but this tool did not seem appropriate for this task; facebook could

provide all the necessary communication.

The preferred SM model was first tested by setting up a trial weblog (now

http://ppgwirral1.wordpress.com/) and project facebook page (https://www.facebook.com/ICPPG).

Initially both these systems were unpublished ie restricted to invited users (the work group

members) to allow volunteers to experiment. This cautious approach caused some problems with

the weblog. Restricting users meant that they had to be registered with the appropriate system.

Google’s blogger was first used; this required users to open a Google account. As some people found

this difficult, it was decided to move to a WordPress system. Again, this did not prove that

straightforward and the project team are grateful to all those who persevered and succeeded in

testing out the system. This access is not an issue when the systems are launched (made public).

Following this exploratory stage, three PPG chairs volunteered to trial the SM model with their PPGs.

The Informatics Centre staff set up WordPress blogs for each of the volunteers and helped them

adapt these blogs for their specific PPG. Although all three chairs were IT confident, they had no

direct experience of weblogs or facebook. This development was a significant learning experience

for all concerned. Progress was however amazingly rapid and in a few weeks all three PPGs had

launched working systems. Two PPGs extended the initial model by expanding the scope of the

weblog, allowing public comments on the weblog and linking the weblog to the facebook page.

These three systems can be accessed from http://ppgiccreate.wordpress.com/active-ppgs/ and

readers are encouraged to see what has been achieved.

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The current model allows any member of the public to comment on the weblog and any facebook

user to comment on the facebook page. The alternative is a closed system where comments are only

allowed by registered users. It was argued that, based on the difficulties group members had in

registering with the trial weblog, such registration would effectively kill any effective participation.

Patients would not register. The two disadvantages of this openness are the system is not

constrained to the practice patients and some moderation will be needed. The preferred scheme is

to use the weblog for dialogues. That is people are encouraged to comment on the weblog where

the administrator can reply rather than use the facebook page and so have two strands of dialogue.

The model reduces the administration load as:

posts published on the weblog are automatically published (copied) on the facebook page

patients can be encouraged to follow the weblog and like the facebook page thus avoiding

the need to maintain a list of patient emails (with potential confidentiality issues and issues

keeping the list up to date)

patients may prefer to comment on the weblog or facebook page and thereby reduce the

email traffic to the practice.

A typical weblog includes a blog page covering topical news and events, a page of details of the PPG

(including membership, meetings, and minutes) and pages describing surveys, links etc.

Both the weblog and facebook page can provide statistics data showing how often they are viewed

or followed.

This work is now being extended. The Centre had been approached by other Wirral practice

managers asking for help in setting up a SM system for their PPG. The Centre is also working with a

PPG volunteer. This is the first example of co-operating with someone who was not involved in the

development.

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4. Outcome and Learning

This project has demonstrated that a simple ‘two strand model’ of a dedicated weblog and facebook

page is a viable basis for supporting a PPG. The project team believes that this is the first time that

such an approach has been used by a group of PPGs.

The weblog and facebook page provide a ‘home’ for patients to learn more about what is happening

in the practice, share news, highlight ‘issues’ and canvas opinions.

It is relatively straightforward, with some help from the Informatics Centre or from an IT competent

person, to set up these initiatives for a PPG. However there are still outstanding concerns publicising

the sites and developing feedback from patients. These SM initiatives are competing for people’s

attention in a very crowded internet environment. Put simply, the PPGs must persuade the patients

that the benefits of following a weblog or liking a facebook page outweigh the effort (essentially

time) spent. A very simple model has been developed to describe how SM might be applied.

In this PPG context, the user (patient) might access the sites to gain information by learning what the

PPG is and what is does, or details about the practice, or news of any developments (personnel or

services). They might also visit the site because they want to positively support the PPG, suggest

improvements or use this channel to complain. Posting items of local interest would increase the

feeling of community.

The main challenge will be to convince patients and practice staff that SM is now becoming a way of

life and not just an optional extra. That is patients and staff should see these initiatives as normal

way of sharing information and concerns. This change may be helped if and when more internet-

connected computers become available in practice waiting rooms.

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Many other learning points came out of this project. These include:

Current awareness of PPGs and what they do is generally very limited. This approach

provides a basis, perhaps the only effective basis, to promote the PPG and to develop trust

and commitment between patients and staff.

Significant effort was required by the PPG chairs to learn and apply IT skills. There was a

major learning curve. Without their effort, the project would not have achieved its objective

of developing the tools.

The system (weblog and facebook page) should be simple as possible recognising the limited

IT skills that may be available. The system should be simple both to manage and for the

patients to use.

Support should be available to help PPGs set up their own tools.

The SM tools should be owned and managed by the PPG. There is a need to appoint a

suitable ‘administrator’.

This administrator has a duty to moderate comments and to keep the sites topical.

This approach must be shared with practice staff and other PPG members to gain their

confidence and commitment before it is launched to the patients.

This approach provides a means for encouraging other PPG members to contribute.

The SM tools should be used to complement existing practice communication channels eg

the weblog should be clearly linked to the practice website.

The use of password protected pages within the weblog would allow PPG members to share

views in private.

The need to keep the approach simple and understandable has resulted in an approach that

has not yet exploited many aspects of SM. This work has however provided the basis for

using SM to develop and exploit networks eg of younger patients using facebook.

This work considered access to those without internet capability or the relevant IT skills.

Social media should not replace existing marketing streams (leaflets, notice boards etc) but

rather complement these. The use of internet access within a Health Centre could be

explored.

Many of these points are covered in more detail in the Appendices with a ‘User Guide’ both to help

set up the recommended SM tools and how to best use them.

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5. Further Work

It is clear from the learning points above, that although the project has established a viable basis for

PPGs to exploit SM, much work can still be carried out.

There are three primary areas that, given support or funding, could be developed.

1. To publicise this work

a. Use ‘formal’ contacts such as Wirral PPG forums and local Clinical Commissioning

Groups

b. Contact ‘local’ GP practices directly

c. Use SM to spread this project eg contacting PPGs already on facebook, making use

of ‘friends’ on facebook, contacting relevant groups such as @nhssm on twitter

2. To recruit more PPGs to this initiative

a. Develop a ‘package’ for new PPGs. This will include very simple weblog and facebook

page templates for use by non-IT confident PPGs.

b. Develop a cost model appropriate to support those PPGs requiring extra help. Initial

ideas are to charge say £200 for setting up the SM tools with email support. The

guides (see Appendix) should however enable IT proficient PPGs set up their own

systems without any direct input or charge.

3. To support PPGs (both existing volunteers and new) to exploit this technology

a. Continue monthly project team meetings

b. Help PPGs to interact more effectively within their practices

c. Try out new ideas and learn from PPGs’ experiences (good and bad)

d. Develop a ‘rich’ weblog template to capture good practice and to demonstrate what

can be achieved

e. Maintain and extend project weblog eg to include FAQs and share good ideas

f. Develop supporting guides

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Appendixes

A1 Guide to setting up recommended SM tools

The table below shows the main steps in setting up a WordPress weblog and a facebook page. An IT

competent person should be able to set up a weblog, using WordPress or an equivalent tool, and a

facebook page. However this guide is written assuming that the Informatics Centre will provide

support and help to set up these systems for a PPG (if funds are available).

0 Start PPG recognises potential of SM systems and resource needs, and appoints IT confident PPG member (P).

1 Awareness P familiarises themself with current work, visits live weblogs and facebook pages, and reads this User Guide.

2 Registration P registers as user with WordPress and joins facebook

3 Set up weblog/page The Information Centre (IC) sets up 'private' WordPress weblog and facebook page based on existing templates with recommended settings, and with P as administrator.

4 Understanding P explores weblog and page and, with help from IC, customises these for the PPG/practice. This work includes adding graphics and data specific to the PPG.

5 Sharing P explains this initiative to PPG members and relevant practice staff. P tests out systems and invites sympathetic colleagues to view and contribute. PPG appoints deputy administrator.

6 Planning PPG develops outline plan as to how these systems are to be used and promoted.

7 Publication P publishes weblog and page. PPG publicises these systems within practice and patients.

8 Transfer ownership IC transfers ownership to P.

9 Use PPG uses these systems to share information and views with patients.

0. At the start, before committing any significant resources, the PPG should be aware both of the

potential benefits and the likely effort required. It is critical to appoint a person (the

administrator) to control this process. Such an administrator should be IT confident ie at least

able to access the internet, use emails, browsers and general ‘office’ software. This should also

have the confidence of the ‘stakeholders’ such as other PPG members including the chair,

practice manager and appropriate GPs. Resources will required both to set up the systems (best

estimate a few hours/week for 1/2 months) and look after the system (about 1 hour a week).

Running costs apart from time should be minimal.

1. The administrator should familiarise themself with the basis of this work and the system

proposed (essentially this guide). They should look at the systems already in operation with

other PPGs; see http://ppgiccreate.wordpress.com/active-ppgs/.

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2. This approach recommends the use of WordPress.com for the dedicated PPG weblog.

WordPress is a well recognised and well used system, and free in its basic form. The

administrator will need to register with WordPress and set up a personal account before using

the weblog. This is relatively straightforward; it only requires a valid email address and it’s free.

See A3.2 for details. Similarly as this approach also uses a facebook page, the administrator will

need to set up a personal facebook account; again see A3.2.

3. The Informatics Centre would adapt the weblog template and facebook page for the PPG and

appoint the administrator as a joint ‘administrator’ for the weblog and ‘manager’ for the

facebook page. The Informatics Centre would also install the recommended privacy settings.

4. Initially the weblog and page will be private (ie unpublished) only visible to the Informatics

Centre and the PPG administrator. This privacy allows the administrator to ‘play’ with the

systems, for example add pages, posts or comments. The Informatics Centre will help the

administrator modify the system to be PPG and practice specific by adding relevant graphics,

appropriate contacts, minutes etc.

5. Once the administrator is comfortable with the system, the next stage is to share this with

colleagues both lay PPG members and relevant practice staff. The Informatics Centre has

prepared a brief presentation (http://ppgiccreate.wordpress.com/2012/11/05/presentation-for-

ppgs/) that could be used in explaining this initiative. As noted above the systems are

unpublished at this point. The administrator can demonstrate the systems from their accounts

or invite interested colleagues to set up WordPress accounts to view, contribute to or edit the

weblog. Similarly colleagues could be asked to set up facebook accounts and then be given

access to the facebook page. If setting up accounts is seen to be too difficult, it may be

appropriate to delay the sharing until the systems are published (see 7 below).

6. Before launching the system to the patients and practice staff, the PPG should agree in outline

how it will use these SM tools. The PPG must agree how the system will be controlled and

resourced, what it wants to communicate, how it will manage feedback and comments, and how

to publicise this work. See section A2 for more guidance. The administrator must receive the

trust and support of all relevant ‘stakeholders’ before committing the PPG and resources to this

approach.

7. When all are committed, the systems can now be published by removing the privacy constraints.

This launch should be accompanied by a publicity campaign (see section A2.5).

8. Once the systems are fully operational and the PPG members are confident to continue running

then the Informatics Centre will transfer ownership and withdraw.

9. The final stage is to use these tools to support the PPG.

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A2 Guide to using the SM tools

A2.1 Managing the system

The basis of this work is that the PPG, not the practice, owns and is responsible for the weblog and

facebook page. A ‘manager’ or administrator is required to run these SM tools. Their roles and

responsibilities need to be defined and understood to ensure the system is used effectively and in

particular to ensure that all relevant people trust the system.

The administrator should have:

A reasonable confidence in IT or at least some basic IT skills and access to IT support

(practice or family or friend).

A good working relationship with the PPG officers and practice staff.

The time to support this work eg to read comments and moderate if necessary, and to keep

the system topical.

A shared vision both for the PPG and this initiative.

A deputy to run the system in the manager’s absence.

A2.2 Communicating

The primary role of this system is communication. It should support relevant information flow over

the various networks. The dominant network includes patients, staff and PPG members. However

the PPG should recognise other relevant players such as the local Clinical Commissioning Group,

patient forums, Department of Health and NHS entities, and patient participation support groups.

The PPG should be aware of what is happening outside the practice and pass information on as

appropriate.

The following points describe how the system should be used to communicate:

It should be made very clear that this system is run by the PPG and any personal or medical

matters must be referred to the practice.

Information should be published on the weblog not on the facebook page.

Information is generally either ‘static’ (eg background to PPG or contact details) that should

only be updated occasionally, or ‘topical’ (essentially news items or posts) that should be

updated regularly (weekly).

Ideally the posts should be relevant and interesting, sharing information and, on occasions,

inviting responses from patients. Posts should contain local news. Posts are linked (featured)

onto the facebook page.

Posts could contain news on what the PPG is doing (concerns, progress), PPG meetings

(open forums, minutes), changes in the practices (staff, clinics, premises, opening times),

health campaigns (eg flu jabs), local and national patient related organisations (CCGs, forums

etc).

Posts should also include surveys (eg views on waiting times) and develop threads of

comments or open dialogue with patients. Patients should be encouraged to raise new

topics for discussion. Some discussion threads could be ‘seeded’ to start new conversations.

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Only authorised users can post on the weblog. These users will include the administrator and

their deputy. Other responsible people can also be invited to contribute.

Although any public facebook user can comment on a facebook item, they should be

encouraged to comment on the original post on the weblog. This policy constrains

discussions to the weblog and avoids parallel conversations.

This SM system should integrate with the practice website with links to and from each

system.

This SM initiative must work alongside all the existing conventional practice channels (eg

noticeboards, newsletters, practice website, practice handbook, contact forms, emails, word

of mouth etc).

It should be noted that the weblog and facebook page are public and visible to anyone, not

just patients of the practice.

A2.3 Interacting

The purpose of these SM tools is not only to pass out PPG/practice news but to encourage all

patients to share their concerns and hopes for the practice. There are several ways in which this

interaction can be promoted.

Surveys

Discussion threads

General comments

If interaction is to work, patients must believe that any comments they make or any survey replies

will be read and considered. This puts a significant onus on the administrator(s). They need to

regularly monitor the weblog and facebook page. They need to reply to comments, start new

threads based on any input, and moderate any unsuitable comments as appropriate.

This project has considered moderation in some detail with the main issue being pre-, reactive or

post- moderation. With pre-moderation, the administrator reads all comments and approves those

they want publishing. Effectively this is analogous to ‘letters to the editor’ in a newspaper. With

post-moderation, the public can post comments but all comments are read by the administrator

who can then delete those considered unsuitable. With reactive moderation, comments are only

usually checked if someone complains. The recommended approach is post-moderation. That is the

system provides an open but watched noticeboard. Comments are only removed if deemed

inappropriate by the administrator, possibly after complaints. This approach allows the use of

facebook where comments cannot be pre-moderated but can be deleted or hidden. The WordPress

weblog settings should also be chosen to allow free commenting. Each PPG will have to find a

balance between allowing free input and censorship. A variety of guidelines are available to help

moderation (see A3.3).

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A2.4 Privacy

One of the main concerns has been the privacy and the potential publication of personal especially

medical data. This concern can be considered from three perspectives.

The PPG and administrator(s). The PPG have to decide on what PPG information is

published. This is an issue already faced on practice websites. A survey of some 30+ practice

websites indicated that only about 50% published the names of PPG members (often

‘buried’ in meeting minutes); the rest were anonymous. It is recommended that PPGs

provide some details (names particularly of chair and officers, and say a group photo) if they

want to relate to the patients. It is also recommended that patients are invited to contact

the manager directly rather than the practice for PPG matters. The administrator may wish

to set up a separate email account (eg ppgxyz@xyzmail.net) rather than use a personal

account. There is no reason to show any further personal details on the weblog or facebook

page.

Commentators. These are patients, or any other member of the public, who make

comments on the weblog or facebook page. Note the facebook page should be set up so

that only administrator(s) can post items; however facebook always allows comments on

posts. Although patients should be dissuaded from publishing personal details, especially

those which identify them and disclose any medical matters, some tolerance must be

allowed. Otherwise comments become totally anonymous and interaction becomes

meaningless. The administrator(s) should of course moderate any inappropriate disclosures.

It should be noted that facebook users already face privacy issues and choose their own

settings.

Potential victims. The explosive growth in SM usage, particularly to spread gossip, has

resulted recently in some well publicised cases. There is clearly a risk that members of the

public could potentially post defamatory or inaccurate information. This risk can be

minimised by careful monitoring and moderation. It is argued that this SM approach

provides a controlled environment for patient interaction. If this system was not available,

aggrieved patients could easily set up their own SM sites to spread misinformation.

Regrettably any internet based system is vulnerable to security breaches. This problem is not

restricted to SM. It is a necessary, although perhaps pious, comment to say all internet and smart

phone users should be aware of potential risks and take appropriate action. The choice of a

WordPress weblog as the primary communication tool should minimise some of these issues.

A2.5 Marketing

This SM initiative will only be successful if it is publicised within the practice community. Any

publicity should make use of conventional channels both in promoting the initiative in its early stage

and in engaging with those patients who do not have access to the internet. The practice website

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must display a clear link to the PPG weblog and facebook page. This is critical not only to draw

patients to the PPG sites but also to demonstrate the practice’s support and commitment.

Other ideas include:

Handouts and flyers

Noticeboards

Promotion in practice handbooks and newsletters

Text messages and emails where permission has been given

Link on practice website

Word of mouth

QR codes (to weblog or facebook page) displayed in reception

Invitations to follow weblog and like facebook page

Publicity in local press or local social media

Prizes, games

Once patients are aware of the system and as numbers increase, the emphasis should change to

using SM to increase the patient user/viewer network. The viewers should be encouraged to follow

the weblog, to like the facebook page, to get their friends to like the page, and to contribute. Going

‘viral’ is probably an unrealistic target but SM should be used to promote SM.

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A3 References/Links

This section provides supporting information and links to useful documents and organisations. It is

selective.

A3.1 Examples of Social Media

There is a plethora of published data on this topic. The table below gives a few examples.

General Social media information

http://www.healthpromotion.cywhs.sa.gov.au

/library/Social_media_use_in_health_promot

ion_FINAL_REPORT.pdf#nhssm

Good summary of SM and its application to health promotion by the Government of South Australia

http://www.devonpct.nhs.uk/Library/CCG_DEVELOPMENTS/NEW_CCG_social_media_no_videos_251012.pdf

Useful and easy to read introduction to SM written by a NHS PCT

http://dl.dropbox.com/u/4469945/RCGP%20Social%20Media%20Highway%20Code%20-%20draft%20for%20discussion.pdf

A draft guide by Royal College of General Practitioners on SM. Page 10 gives a summary code.

http://www.surepoint.co.uk/documents/socialnetworkingtoolsinthenhs.pdf

Note by NHS Faculty of Health Informatics on ‘The power and perils of using social networking tools in the NHS’

Facebook

http://ppgiccreate.files.wordpress.com/2012/10/facebook-ppgs.pdf

Brief survey by Informatics Centre on PPGs using facebook pages

https://www.facebook.com/pages/NAPP-National-Association-for-Patient-Participation/349848251764153

NAPP

https://www.facebook.com/WestCheshireCCG?ref=ts&fref=ts

West Cheshire CCG

https://www.facebook.com/wirralgpcc?ref=ts&fref=ts

Wirral CCG

Twitter

https://twitter.com/nhssm NHS social media ‘group’

https://twitter.com/westcheshireccg West Cheshire CCG

https://twitter.com/WirralGPCC Wirral CCG

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A3.2 Weblog and facebook pages

The weblog uses WordPress.com both as basis for the weblog design and also as the host server.

This means all the weblogs will have an address such as xyzppg.wordpress.com. One of the

objectives of this work was to develop a simple system which could run by someone with only

limited IT knowledge. http://en.support.wordpress.com/ provides help. The basic WordPress setup

is free ie there no user charges. However WordPress.com offers a premium service, charging more

for additional facilities eg specific domain name. As WordPress provides open source software, it is

possible to set up a WordPress weblog using another host server. It would also be possible to set up

weblogs using Google blogger or Posterous, or any other system one prefers.

WordPress offers a variety of facilities and options; these include:

Appearance. There are a variety of designs (themes) available to give a weblog a distinctive

look. The basic themes are free; others cost. This project has chosen a simple free theme

(‘twenty eleven’) and used it consistently across all weblogs; see example template

http://ppgwirral1.wordpress.com/. The themes use headers (graphic images) at the top of

each page. Although WordPress offers default images the project has used a specific image

for each PPG weblog.

Audience/network. Weblogs can be private (unpublished) only available to invited users, or

public available to anyone. It is recommended that weblogs are set up as private so that the

‘administrators’ can explore and try out ideas with a limited known network. The weblog can

be published when all are comfortable. Even when the weblog is public, there are options to

make designated posts or pages private; for example to allow PPG members to converse in

confidence.

Users. Users are invited people who have WordPress accounts. Each weblog has an

administrator who essentially owns the weblog. Other user roles include editors, authors,

contributors, and followers. In its simplest form, a weblog probably only needs an editor as a

deputy when the administrator is away. In the initial private stage, others eg PPG members

can be invited to view. They will need a user account. To set up an account see

https://signup.wordpress.com/signup/?user=1. For more on users see

http://en.support.wordpress.com/user-roles/.

Pages and posts. Very simply, a weblog consists of a ‘blog’ page where new items are

‘posted’ and ‘static’ pages which give supporting information. Static pages can have sub-

pages, accessible from a drop down menu. http://ppgwirral1.wordpress.com/ is an example

of a simple layout. A weblog needs to be topical so posts should be regularly added, say

every few days. The other pages contain general information particularly about the PPG

itself and the practice eg PPG members. These pages should be updated as necessary say

every few weeks.

Comments. The main purpose of this SM approach is to help the PPG interact with patients.

This is achieved by establishing an audience or network and encouraging them to give input

and feedback to the PPG. A key part is to allow people to comment on posts or pages. It is

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recommended that the weblog is set up so that anyone can comment. As non-users cannot

post directly on the weblog, patients should be given the opportunity to suggest new topics

for discussion. These suggestions can then be posted by the manager to start new threads.

See http://en.support.wordpress.com/category/comments/.

Links. WordPress blogs can link to other SM tools. This approach simply uses a link to the

PPG facebook page so that every new post is displayed on that page to ‘advertise’ the

weblog.

Media. WordPress allows various media such as pictures, videos, and documents, to be

published on pages or posts (eg http://ppgvmc.wordpress.com/minutes-of-last-meeting/).

Surveys and contact forms. WordPress offers the facility to carry out simple surveys (eg

survey) and to add contact forms (eg virtual group form).

Tools and widgets. It should be noted that there are a series of options to ‘customise’ the

weblog.

Analytics or ‘stats’. One of the arguments for using SM is its ability to provide feedback on

how it is being used. WordPress provides data eg on number of viewers; see

http://en.support.wordpress.com/stats/.

Facebook offers the opportunity to reach a network of established, particularly younger, users. It is

recommended that the PPG sets up a facebook page such as https://www.facebook.com/ICPPG.

Such a page should:

Have two managers (weblog administrator and deputy)

Provide basic information about the PPG

Limit posting to managers

For more details see https://www.facebook.com/help/?ref=drop

It should be noted that facebook users set their own privacy setting and disclose as much personal invitation as they deem appropriate. The may mean that at times some personal data might be apparent.

A3.3 Moderation guidelines

Most organisations publish guidance here. Much of it is common and common sense.

http://www.bbc.co.uk/blogs/moderation.shtml An excellent place to learn about moderation

http://www.commissioningboard.nhs.uk/comment-policy/

Example of moderation guidelines by a NHS organisation

page 22 FINAL

A3.4 Interaction

This project is concerned with supporting PPGs ‘to improve patient participation and make GP

practices more responsive to the needs and wishes of patients’. The project team however recognises

the several initiatives that are part of an evolving culture to engage with patients. These initiatives

include:

Involving individual patients in decisions about their healthcare

Involving patients in a dialogue with their GP practice (ie PPGs)

Involving the general public in a dialogue with organisations such as their local clinical

commissioning group

Some of these initiatives can be explored using the links below.

General information about PPGs

http://www.nhsemployers.org/PayAndContracts/GeneralMedicalServicesContract/DirectedEnhancedServices/Pages/DESs-2011-12.aspx

Background information to the Dept of Health Direct Enhanced Service on Patient Participation. Gives some useful links

http://www.nhsemployers.org/SiteCollectionDocuments/Patient_participation_DES_guidance_2011-12%20to%202012-13_includes_GPAQ_and_IPQ%20_links_ja140711.pdf

Further guidance

http://www.practicemanagement.org.uk/uploads/access_guide/8_patient_engagement.pdf

General guidance on patient engagement for practice managers

http://www.bhlink.org/res/media/pdf/UsefulPPGInformation.pdf

Useful information on PPGs from a ‘link’ (Brighton and Hove)

http://www.napp.org.uk/ National Association for Patient Participation

No decision about me, without me

http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_134218.pdf

Background to White Paper

http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_134731.pdf

Government information strategy for public health, adult social care and for the NHS in England

http://www.health.org.uk/public/cms/75/76/2601/1841/Background%20briefing_No%20decision%20about%20me%20without%20me.pdf?realName=4RqTe0.pdf

Background briefing