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Contents 1 Introduction ............................................................................................................... 3 2 Purpose of survey ..................................................................................................... 4 3 Survey methodology ................................................................................................. 4 4 Results ...................................................................................................................... 5

4.1 Demographic characteristics of respondents ..................................................... 5 4.2 Identity of respondents ....................................................................................... 9 4.3 Awareness of SIGN Guidelines .......................................................................... 9 4.4 Purpose of SIGN Guidelines ............................................................................ 10 4.5 Best known Guidelines ..................................................................................... 11 4.6 Routes to awareness of SIGN Guidelines ........................................................ 11 4.7 Guideline formats ............................................................................................. 12 4.8 Patient versions of Guidelines .......................................................................... 13 4.9 Participation in Guideline development and review.......................................... 14 4.10 Personal experience of SIGN Guidelines ....................................................... 17 4.11 Implementation of SIGN Guidelines ............................................................... 21

5 Observations, conclusions and updates ................................................................. 23 5.1 Limitations of survey ........................................................................................ 23 5.2 Characteristics of sample ................................................................................. 23 5.3 Awareness of SIGN Guidelines across Scotland ............................................. 23 5.4 Routes to awareness and formats of Guidelines ............................................. 24 5.5 Patient versions of Guidelines .......................................................................... 24 5.6 Participation in Guideline Development and Dissemination ............................. 25 5.7 Personal experience of SIGN Guidelines ......................................................... 25 5.8 The value of SIGN Guidelines for healthcare in Scotland ................................ 26

6 Overall conclusion ................................................................................................... 27

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1 Introduction The Scottish Intercollegiate Guidelines Network (SIGN) was formed in 1993. It is a body within NHS Healthcare Improvement Scotland (HIS). The purpose of SIGN is to improve the quality of healthcare for people in Scotland by reducing variation in practice, through the development of national clinical guidelines based on the current best evidence. Implementation of SIGN Guidelines is the responsibility of each individual NHS Board. However, SIGN is increasingly supporting implementation by taking action on:

• Raising awareness of Guidelines • Linking with national projects and clinical networks responsible for

improving services • Developing implementation support tools and resources

SIGN is committed to involving patients, carers and interested members of the public in the development of Guidelines, in raising awareness of new Guidelines and in implementation of Guidelines. SIGN is a partner in DECIDE, which is a five-year (started January 2011) collaborative project funded by the European Commission’s 7th Framework Programme and is designed to research and improve ways in which healthcare evidence and recommendations are presented in clinical guidelines. Within the Project, SIGN takes the lead on strategies for communicating evidence-based recommendations to patients and the public. This survey therefore contributes to the work of SIGN within DECIDE. Voluntary Health Scotland (VHS) is the national intermediary body for voluntary sector health charities and patient interest groups. One of its key strategic objectives is to promote best practice in public involvement in health services. VHS aspires to see a broad range of people in Scotland, including those with specific conditions and people from less visible groups, contribute to the development of health policy and health services. VHS is represented at SIGN Council and on its Strategy Group, in order to ensure that patient interest groups and their members are able to participate fully in Guideline development, review and implementation. Voluntary Health Scotland collaborated with SIGN during 2011 in order to undertake this survey into patient and public awareness of SIGN Guidelines and their application and implementation in health care in Scotland. VHS devised the survey and produced this report.

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2 Purpose of survey The purpose of the survey was to gain an understanding of the extent of patient and public awareness of SIGN Guidelines and to ascertain views on their application and implementation.

3 Survey methodology In co-operation with the SIGN Implementation Team, VHS developed a simple questionnaire, which sought to gain information on:

• Public understanding of the purpose of SIGN • Patient and public awareness of SIGN Guidelines and of patient-focused

information on the Guidelines • Personal experience of SIGN Guidelines as applied to individual patient care • Appreciation of the value of SIGN Guidelines in healthcare in Scotland

The questionnaire was developed using Survey Monkey. Following piloting with about 30 respondents, slight adjustments were made. The survey was carried out during a two-month period in 2011. The questionnaire was distributed widely through the following channels:

• VHS voluntary sector members and stakeholders network (c. 1,600) • Other key Scottish voluntary sector networks (including as many as possible

with an equalities focus) - BEMIS, REACH, CHEX, LTCAS • Citizens Advice Bureaux (CABx) • Voluntary sector local Interfaces (formerly Councils of Voluntary Service /

CVS) in 32 local authority areas • Volunteer Centres in 32 local authority areas • Via the VHS website (c. 300,000 hits/monthly) & e-news (c. 1,900 circulation) • Via the SIGN website (c. 1m hits/monthly) • Through Patient Focus & Public Involvement (PFPI) leads at all NHS Special

Boards (with specific approaches to SIGN, HIS and SMC public partners) • Scottish Health Council for distribution to Public Partnership Forums (PPFs) • Voluntary Service Managers in NHS Boards • Personal contacts known to the researcher

It was recognised from the outset that responses to the survey gained through these routes would be likely to yield a greater awareness of SIGN Guidelines than would be expected if responses were received from a randomly selected population. Efforts were therefore made to ensure as wide a distribution as possible. A copy of the Questionnaire is contained in Appendix 1. For ease of reference, the number and if relevant, the exact text of the question is referred to throughout the Results section. Throughout the questionnaire, many respondents marked more than one answer, although they had been asked for one. Thus, where the proportion of responses to particular questions is shown, percentage figures often total more than 100%.

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4 Results A total of 359 people embarked on the survey. A total of 310 respondents left their name and 312 respondents provided an e-mail contact address (Questions 1, 2).

4.1 Demographic characteristics of respondents Gender Of the 335 respondents who answered the question, 229 (68.5%) were female and 106 (31.5%) were male (Question 3). The figure below shows the gender distribution of respondents. Fig 1: Gender distribution of survey participants

Age 337 respondents gave the age group to which they belonged (Question 4). The largest number came into the 45 – 59 age group (139, 41% of respondents), with 111 respondents (33%) coming into the 60 – 74 age group and 64 (19%) in the 30 – 44 age group. The figure below shows the age distribution of respondents

32%

68%

Male

Female

6

Fig 2: Age distribution of respondents

Ethnicity Respondents were invited to identify their ethnic group (Question 5). Of the 334 people who responded to this question, over 96% (321) identified themselves as white Scottish or white British. Very few respondents identified themselves as being from other ethnic backgrounds. Of those who did, three were Asian, Asian Scottish or Asian British. Most of the remainder (10, 3%) were from a variety of ethnic backgrounds: white Irish, white French, white German, Greek, New Zealander, Australian, Jewish. The figure below shows the ethnic composition of the respondent group. Fig 3: Ethnic composition of respondent group

0 - 15

16 - 29

30 - 44

45 - 59

60 - 74

75 & over

White Scottish or WhiteBritish

Asian, Asian Scottish orAsian British

Black, Black Scottish orBlack British

Other ethnic background

7

Health status Respondents were then asked if they had a specific condition or disability (Question 6). 329 out of the total of 359 respondents (91.5%) answered this question. Of those who responded, 168 (51%) indicated that they had a specific condition or disability, with the remaining 161 (49%) saying that they did not. Respondents were invited to say if they were affected by specific conditions, marking from a given list as many categories as they considered relevant (Question 7). 158 people (44% of all respondents) answered the question. The most frequently mentioned specific condition category was musculoskeletal conditions (44 responses, 27.8% of those who responded to the question). This was followed by cardiovascular conditions (37 responses, 23.4%) and mental health conditions (25 responses, 15.8%). A total of 56 respondents (35.4% of those who answered the question) indicated that they were affected by a specific condition which came into the “Other” category. The figure below shows the prevalence of specific conditions experienced by respondents, by frequency of mention. Fig 4: Prevalence of specific conditions experienced by respondents

Conditions mentioned within the “Other” category included: diabetes (23 mentions); neurological conditions (19, 12%), cancer (10 mentions); asthma and /or COPD (7 mentions). Other specific conditions mentioned came into the already given categories of gastrointestinal conditions (18, 11.4%), dermatological conditions (9, 5.7%).

0% 5% 10% 15% 20% 25% 30% 35% 40%

Dermatological

Gastrointestinal

Neurological

Mental health

Cardiovascular

Musculoskeletal

Other

Sp

ec

ific

co

nd

itio

n

Freq uency o f me ntion

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Respondents were also asked whether they were affected by specific disabilities (Question 8). They were asked to mark as many categories in a given list as they considered relevant. 84 people (23.4%) answered this question. Respondents indicated that they were affected by disabilities in the following categories: Physical disabilities – 63 (75% of those responding to the question) Sensory disabilities – 19 (22.6%) Learning disabilities – 5 (6.0%) 10 respondents said that they were affected by other disabilities. These repeated conditions and disabilities already listed, including: psychological and mental health conditions, hearing loss, ADHD and autism. Location Respondents were then asked in which NHS Board area in Scotland they lived, or to indicate where they lived if responding from outside Scotland (Question 9). This question was asked in order to provide SIGN with some picture of public / patient awareness of Guidelines in different NHS Board areas. 358 people answered this question (99.7% of total sample). Respondents in Scotland lived in all NHS Board areas, except the Western Isles. The figure below shows the NHS Board areas in which respondents lived, by percentage of respondents. Fig 5: Location of respondents by NHS Board

The remaining respondents were from elsewhere in the UK (8, 2.2%) and Australia (2 respondents).

0% 5% 10% 15% 20% 25%

Western Isles

Shetland

Dumfries & Galloway

Orkney

Ayrshire & Arran

Borders

Fife

Lanarkshire

Grampian

Highland

Tayside

Forth Valley

Greater Glasgow & Clyde

Lothian

9

4.2 Identity of respondents Health care professional or patient / carer / member of the public? SIGN and Voluntary Health Scotland believed that, in order to address the main purpose of the survey – patient / public awareness of SIGN guidelines - it was important to focus only on those responses which came from non-health / social care professionals (i.e. on responses from, collectively, “patients”, “carers“ and “members of the public”). Respondents were therefore asked to indicate in which primary capacity they were responding to the survey, by ticking one of four main categories given (Question 10). 312 people answered the question (86.9% of the total sample). Of these, 80 declared themselves to be primarily responding as a health / social care professional (25.5% of those answering the question). 92 people (29.5% of those answering the question) were responding primarily as a patient currently receiving treatment from the NHS or as a carer of a patient currently receiving treatment from the NHS. Some respondents however identified themselves both as health / social care professionals and as patients / carers. A further small number described themselves as patients or carers and as “interested members of the public” (Question 10). “Interested members of the public” elaborated on this information, thereby identifying themselves as people likely to be interested in SIGN Guidelines through roles such as: members of PPFs or CHPs (9 people); public partners with SIGN or QIS (5 people); volunteers with the NHS or within voluntary sector groups (5 people). Thus, of the 312 people who indicated the category to which they belonged, 80 respondents (25.5%) were health / social care professionals and 232 (74.5%) were responding as “patients” or / and “carers” or / and “members of the public”.

4.3 Awareness of SIGN Guidelines As an extra filter, VHS aimed to seek further information only from those who were aware of SIGN and its Guidelines. Respondents were therefore asked: Have you heard of / are you aware of SIGN Guidelines? (Question 11) 340 people answered this question. 235 respondents (69%) had heard of SIGN Guidelines, whereas 105 (31%) had not. The figure below shows the proportion of respondents who were aware of SIGN Guidelines.

10

Fig 7: Extent of awareness of SIGN Guidelines

At this point, all health / social care professionals and all those others who were not aware of SIGN Guidelines were asked to leave the survey and thanked for their participation. This left a valid sample of 235 (65% of the original respondent number). As a check on respondents’ declared awareness of SIGN Guidelines, participants were asked to identify the symbol depicted in the SIGN logo (Question 12). Of the 153 who answered the question, 74 correctly recalled the thistle emblem.

4.4 Purpose of SIGN Guidelines VHS and SIGN considered it important to test respondents’ understanding of the core purpose of SIGN Guidelines, as it seemed likely that this might not be universally understood. Respondents were therefore asked what they understood the purpose of SIGN Guidelines to be (Question 13). 161 people answered the question (69% of sample). A relatively small number of respondents (25) correctly identified SIGN’s central purpose of reducing variation in clinical practice, using either this phrase or similar e.g. to promote consistency of practice across the country. A similar number of respondents (23) cited the slightly broader purpose of promoting evidence-based best practice (or similar). However, few respondents appeared to have a completely inaccurate understanding of the purpose of SIGN Guidelines. Those few who did offered responses such as: to inform clinicians and the public about clinical care, in plain English; to promote patient involvement in health care.

69%

31%

Yes

No (No further questions ifthis answer is selected)

11

4.5 Best known Guidelines VHS then sought to establish which Guidelines were best known to respondents (Question 14) 154 responses were received. Many respondents cited many different Guidelines, the most frequently mentioned being those relating to diabetes, mental ill-health (including depression, post-natal depression, bi-polar disorder and schizophrenia), and Guidelines relating to aspects of heart disease and a number of cancers. The figure below shows the most commonly identified Guidelines, by frequency of mention. Fig 8: Most commonly identified Guidelines

4.6 Routes to awareness of SIGN Guidelines VHS and SIGN next wanted to know where respondents had seen or become aware of SIGN Guidelines (Question15). 112 respondents answered the question. The most common way for members of the public to find out about SIGN Guidelines was through a direct mailing from SIGN itself, from another NHS partner, or from VHS. Over half the respondents (55%) had heard about Guidelines in this way. The SIGN and VHS websites were also routes to awareness of SIGN Guidelines (mentioned by 47% of those who responded). 20 respondents (18%) had obtained hard copies of Guidelines from a patient information centre in a hospital. Other routes to awareness of Guidelines were cited – being a patient representative in Guideline development groups or in Managed Clinical Networks (MCNs) (9 mentions) or through membership of patient support groups or charities (7 mentions). The figure below shows the routes to awareness of SIGN Guidelines.

0 5 10 15 20 25 30 35

Autism and ADHD

Breast cancer

Epilepsy

Neurological conditions

Skin conditions

Asthma

Dementia

Other

Stroke

Cancers excl breast cancer

Heart disease

Mental ill-health

Diabetes

Gui

delin

es

Frequency

12

Fig 9: Routes to awareness of SIGN Guidelines

4.7 Guideline formats Respondents were then asked to identify the format of Guidelines they had most often viewed (Question 16). Of the 136 people who responded to the question, the majority (96, 70.5%) had viewed Guidelines in electronic format – usually online. 68 respondents (50%) had, alternatively or additionally, seen printed copies of SIGN Guidelines. Two respondents had seen a DVD version of a Guideline (these are produced in British Sign Language (BSL)). Other formats mentioned (24 in all) included Guidelines in booklet form (these last were likely to be patient information booklets). The figure below shows the formats in which Guidelines had most often been viewed. Fig 10: Most often viewed Guideline formats

0%

10%

20%

30%

40%

50%

60%

GP surgery Hospital patientinformation

centre

Public Library National media Local media Website Email fromSIGN partner

(e.g. NHS, VHS)

0%

10%

20%

30%

40%

50%

60%

70%

80%

Alternative languageformat e.g. Urdu

Printed copy/leaflet Electronic format DVD

13

4.8 Patient versions of Guidelines SIGN began to produce patient versions of Guidelines in 2007. Some 12 Guidelines have been produced in patient versions since then. VHS and SIGN therefore wished to find out specifically whether people were becoming aware of the patient version of Guidelines (Question 17). Of the 164 people who responded to the question, 99 (69.5%) had not seen patient versions. 65 respondents (39.5%) had seen patient versions. The figure below shows awareness of patient versions of Guidelines. Fig 11: Awareness of patient version of Guidelines

. Further, respondents were asked which Guidelines they had seen in patient versions (Question 18). Most frequently mentioned were patient versions of Guidelines for the management of diabetes (13 mentions), various aspects of heart disease (11 mentions), stroke (5 mentions) and autism (3 mentions).The figure below shows the most frequently mentioned patient versions of Guidelines. Fig 12: Most frequently mentioned patient Guidelines

0%

10%

20%

30%

40%

50%

60%

70%

Yes No

41%

34%

16%

9%

DiabetesHeart diseaseStrokeAutism

14

4.9 Participation in Guideline development and review VHS has long been keen to encourage participation by patients and carers in the development of Scottish health policy. At the same time, all NHS bodies are committed to patient and public involvement in health policy and services development. Participation in the development and review of SIGN Guidelines is one way in which patient groups can bring their perspective to health care policy. The SIGN website has a page dedicated to patient and public involvement where it describes a variety of ways in which patients and carers can become involved.

Accordingly, the survey focused next on four ways in which patients and carers can participate in the work of SIGN. These addressed participation in Guideline Development and Review Groups, attendance at national meetings on new Guidelines and response to consultation on patient versions of Guidelines (Questions 18, 19, 20, 21). Participation in these four areas of Guideline development and dissemination was fairly low. 4.9.1 Respondents were first asked if they had ever been involved in a SIGN Guideline Development Group (Question 18. The majority of the 167 respondents to this question had not been involved (145, 87%). 4.9.2 Next, respondents were asked if they had ever been involved in a SIGN Guideline Review Group (Question 19). Again, the majority of the 163 who responded to this question had not been involved (148, 91%). 4.9.3 A third question in this section asked respondents if they had ever been involved in a national Guideline Meeting (meeting to launch and publicise new Guidelines) (Question 20). 166 people responded to this question and again, the majority (129, 83.5%) had not attended a national meeting. 4.9.4 Finally, respondents were asked if they had ever been involved in a consultation on a patient version of a SIGN Guideline (Question 21). Of the 165 people who responded to this question, the majority (136, 82.5%) had not been involved in a consultation of this kind. The figure below shows the numbers and percentages of those responding positively and negatively to these four questions (since the numbers responding to the questions were very similar (167, 163, 166, 165), the response number has been considered as N = 165, in the interests of simplicity).

15

Fig 13: Patient and public involvement in SIGN Guideline processes

Guidelines featuring in these four areas of participation were broadly similar and focused on diabetes, aspects of heart disease, stroke and mental health (particularly depression and dementia). 4.9.1 Those 21 respondents who had been involved in Guideline Development Groups (Question 18) had mainly taken part in the development of Guidelines for different mental health conditions (4 mentions), aspects of heart disease (3 mentions), stroke (2 mentions) and diabetes (2 mentions). The figure below shows areas of respondent involvement in Guideline Development Groups. Fig 14: SIGN Guideline Development Group involvement

4.9.2 Those 15 respondents who had been involved in Guideline Review Groups (Question 19) had mainly taken part in Guideline Review Groups for stroke (2 mentions), diabetes (2 mentions), heart disease (1 mention) and depression (1 mention).

0 50 100 150 200

GuidelineDevelopment Group

Guideline ReviewGroup

Guideline Meeting

Patient versionGuideline

Consultation

YesNo

19%

14%

10%

10%

47%

Mental Health

Heart Disease

Stroke

Diabetes

Other

16

The figure below shows areas of respondent involvement in Guideline Review Groups. Fig 15: SIGN Guideline Review Group involvement

4.9.3 Of the 27 respondents who had attended a national meeting to launch a Guideline (Question 20) most meetings had been for aspects of heart disease (3 mentions), management of depression (3 mentions), diabetes (2 mentions), stroke (2 mentions) and management of dementia (1 mention). The figure below shows the focus of national Guideline meetings attended by respondents. Fig 16: SIGN Guideline national meeting involvement

4.9.4 28 people (17.5%) had been involved in consultations on patient versions of Guidelines (Question 21). Again, consultations were mainly on patient versions of Guidelines for diabetes (6 mentions), aspects of heart disease (4 mentions), stroke (2 mentions). Guidelines for skin disorders, domestic abuse and management of alcohol dependence also featured.

14%

14%

7%

7%

58%

StrokeDiabetesHeart diseaseDepressionOther

12%

12%

8%

4%64%

Heart diseaseManagement of depressionStrokeManagement of dementiaOther

17

The figure below shows the patient versions of Guidelines in which respondents had been most involved. Fig 17: SIGN Guidelines patient versions involvement

4.10 Personal experience of SIGN Guidelines SIGN and VHS were interested in people’s personal experience of SIGN Guidelines – whether they, as patients or carers, had been aware of a Guideline being applied to their own treatment and care for a particular condition and how this had happened. The next eight questions, therefore, focused on this issue. 4.10.1 Participants in the survey were first asked if they had ever been aware that a SIGN Guideline was being followed in their own or their relative’s care and treatment for a particular condition (Question 22). 167 people answered this question. A minority of 37 (22% of respondent) said that they knew that a Guideline was being followed, while 78% said that they were not aware of this. Those who knew that a Guideline was being followed were then asked to name the relevant condition and Guideline. The most frequently mentioned conditions featuring in Guidelines were diabetes (7 mentions), aspects of heart disease (5 mentions) and breast cancer (3 mentions).Guidelines were not usually mentioned by exact title. The figure below shows the extent to which respondents reported experience of Guidelines being applied to their care and treatment.

21%

14%

7%

58%

DiabetesHeart diseaseStrokeOther

18

Fig 18: Experience of SIGN Guidelines being applied to individual care and treatment

4.10.2 Respondents were then asked who / which professional had applied the Guideline to their care and treatment (Question 23). Very few people (34) responded to this question, making the information gained unreliable. Of those who did reply, 29 respondents (85%) indicated that a doctor was applying the Guideline, 16 (47%) cited a nurse and 12 (35%) an allied health professional (AHP). One respondent mentioned a psychologist. The figure below shows which professionals were reported as applying Guidelines to individual care and treatment. Fig 19: Professionals applying Guidelines to individual care and treatment

4.10.3 The next question asked in what setting the Guideline was being / had been applied (Question 24). Very few people (35) responded to this question, making the information gained unreliable. Of those who did reply, 16 respondents (46%) identified hospital as the setting for the application of a Guideline, 15 people (43%) primary care and 4 people (11%) other settings, including at home.

21%

15%

9%

55%

DiabetesHeart DiseaseCancerOther

0 5 10 15 20 25 30 35

Doctor

Nurse

Dentist

Allied Health Professional (e.g.physiotherapist)

Other health professional

19

The figure below shows the settings in which Guidelines were being applied to individual patient care. Fig 20: Settings for application of Guidelines to individual patient care and treatment

4.10.4 Respondents were asked next if they had been given a copy of the Guideline (Question 25). Very few people (36) responded to this question, making the information gained unreliable. Of those who did reply, the majority (83%) had not seen the Guideline, with only 6 people having been given a copy of the Guideline. Those people had either been given the patient version, or had seen both, in two cases printing them out for themselves. Fig 21: Respondents given copy of Guidelines

4.10.5 SIGN and VHS wanted to find out from respondents whether knowing that a SIGN Guideline was being applied to individual care and treatment instilled greater confidence in patients and carers (Question 26).Again, very few people (37) responded to this question, making the information gained unreliable.

0 2 4 6 8 10 12 14 16 18

Hospital

Primary care / generalpractice

Specialist centre / unit(e.g. eating disorder

unit)

Other setting

17%

33%

50%Guideline

Patient version

Both

20

Of those who answered the question, the majority (30, 81%) were clear that they felt more confident as a result of knowing that a Guideline was being applied. Only 7 did not feel more confident. The figure below shows the extent to which respondents felt greater confidence in their healthcare knowing that a SIGN Guideline was being applied. Fig 22: Extent to which respondents felt greater confidence as a result of SIGN Guideline applied

4.10.6 The next question asked respondents whether they had been able to tell others experiencing the same condition as themselves about the application of the relevant Guideline to their care and treatment (Question 27). Again, only 37 people responded to the question, making the information gained unreliable. Of those who did, 25 (67.5%) had been able to share their knowledge, with 12 unable to do so. The figure below shows the extent to which patients and carers responding to the survey felt able to tell others about the application of a SIGN Guideline to their care and treatment. Fig 23: Extent to which patients and carers able to tell others about the application of SIGN Guideline to their care and treatment

4.10.7 Respondents were then asked where and how they had been able to share information about the application of a Guideline to care and treatment for a particular condition (Question 28).

0 5 10 15 20 25 30 35

Felt more confident

Did not feel moreconfident

0 5 10 15 20 25 30

Able to shareknowledge

Unable to shareknowledge

21

The very low numbers of people answering this question (23) made the information gained unreliable. The majority of respondents (20) had been able to share the experience and information informally with family and friends, with 8 people sharing this at a support group. The figure below shows how respondents had been able to share information about the value of SIGN Guidelines in the light of their own experience. Some respondents shared their experience in more than one way. Fig 24: Routes for sharing personal experience of Guidelines

4.10.8 Finally, SIGN and VHS wanted to know if respondents had ever requested that their care and treatment for a particular condition should follow a SIGN Guideline (Question 29). The low numbers answering this question (37) made the information gained unreliable. However, the majority of respondents (30, 83%) said they had not made any such request, with only 6 people indicating that they had requested that a SIGN Guideline be applied to their healthcare. They were further asked what the response had been:

• A smile • Doctor argumentative and unresponsive • GP taken aback that I knew about Guideline, also a bit peeved

4.11 Implementation of SIGN Guidelines Finally, participants in the survey were asked if they believed that Implementation of SIGN Guidelines across Scotland had made a difference to the improvement of care and treatment for a wide range of conditions (Question 30). 139 people responded to this question. The majority of respondents (82, 59% of those who answered the question) believed that SIGN guidelines had made some difference. A further 37 respondents (26.5%) believed that they had made some difference. The figure below shows the distribution of responses.

0

5

10

15

20

25

Support Group Sharing informally with friends /family

Other

22

Fig 25: Difference made generally by implementation of SIGN Guidelines

Despite this positive response, a great many additional comments (66) were made about the value of SIGN Guidelines, quite a number of them equivocal. Several respondents said they had no idea whether the Guidelines had made any difference. The remainder of the responses clustered under three headings: application (based on personal experience); implementation (more general observations); and the requirement for evidence of any difference made. Application

• If adhered to [by GPs] they could make a great deal of difference • It depends whether Guideline has been read or ignored • Lip service or, occasionally, if it fitted in with what the clinician wanted to do

anyway • Not always followed by other clinicians

Implementation

• Clinical adoption and support is very variable • If only they worked in practice • Should be more widely used and acknowledged • It is important that healthcare staff at all levels are made more aware of the

Guidelines…and that SIGN is properly funded and resourced in their valuable work

• If adhered to, the comment would be ‘a great deal of difference’ • Not aware if NHS [Health Board] is signed up to fully adopting the Guidelines

Evidence of difference made

• Know that SIGN is highly regarded but unsure of the difference made • [Difference made] is impossible to quantify – and I have not checked if

research has been done • Have not seen any evidence published by SIGN to validate any outcomes

One comment made highlighted the value of SIGN Guidelines as an advocacy tool by patient interest groups: Professionals do know of them, and where they are

0 10 20 30 40 50 60 70 80 90

No difference

Some difference

A great deal ofdifference

23

respected, they make a lot of difference. Carer groups have used them to lobby for better care locally and they are referenced.

5 Observations, conclusions and updates

5.1 Limitations of survey The survey aimed to reach as many people in Scotland as possible. Although it was very widely distributed, fielding a number of responses larger than 359 (235 usable responses, 65% of the original number) would have given VHS and SIGN greater confidence in the results. It was also difficult to avoid the inclusion of a number of health and social care professionals (80 in all), although their responses were excluded from detailed answers on SIGN Guidelines.

5.2 Characteristics of sample The respondent group were predominantly white Scottish (96%), female (70%) and older (>45 = 70%). This sample profile is probably not untypical of respondent groups in similar surveys. But it should be noted that the questionnaire was distributed electronically and it is likely that there are still groups within the community without easy access to the internet. At the same time, however, half of those responding to the survey were affected by health conditions or disabilities. They were thus more likely to come into contact with healthcare practices and standards, including SIGN Guidelines. Conclusion: in the interests of social inclusion, SIGN should consider ways of increasing awareness of Guidelines in sections of the community more likely to experience exclusion, including young people with health conditions or disabilities, minority ethnic groups and economically disadvantaged people. These groups are more likely to experience variation in healthcare experience and less likely to have good access to information. The voluntary and community sector, including Voluntary Health Scotland, can help with locating these sections within the community.

5.3 Awareness of SIGN Guidelines across Scotland People in all Health Board areas across Scotland, with the exception of the Western Isles, appeared to know of SIGN. This is reassuring, since the core purpose of SIGN encompasses a commitment to reduce variation in healthcare practice across the country. At the same time, the majority of respondents were aware of SIGN Guidelines and the core purpose of SIGN was relatively well understood. Interestingly, no respondent characterised SIGN as making economic decisions about healthcare priorities or employing cost-effectiveness to assist decisions about rationing healthcare.

24

Conclusion: SIGN is making good progress in raising awareness of Guidelines and in explaining its purpose well to patients and the public. The majority of respondents became aware of Guidelines through electronic mailings from SIGN, Voluntary Health Scotland and patient interest groups, as well as via the websites of SIGN (>1m hits a month) and VHS (>300,000 hits a month). Again, it should be remembered that some sections of the community do not have good access to the internet.

5.4 Routes to awareness and formats of Guidelines During the period when this survey was carried out, routes for raising awareness of Guidelines with patients and members of the public were relatively limited. The survey showed that the majority of people seemed to be accessing Guidelines electronically via websites and email, although patient leaflets in hospital settings still appeared to have value for a “captive audience”. Conclusion and update: SIGN is committed to exploring new ways of increasing awareness of Guidelines and testing out new formats is likely to bring good results in terms of broadening awareness and application. SIGN is now increasingly using social media such as Facebook, and is introducing phone applications to raise awareness of Guidelines. While the survey showed that a number of people were alternatively or additionally accessing printed copies of Guidelines, these have now been phased out, with the exception of patient versions and leaflets. Advertising in the popular press and free community newspapers might also be considered, to reach some sections of the community. VHS includes features about SIGN Guidelines from time to time in Third Force News (TFN) the voluntary sector broadsheet (circulation 1,300). Since the survey was carried out, SIGN has also introduced a system of Awareness Volunteers – lay people who raise awareness of Guidelines with patients, the general public and healthcare professionals in training by delivering talks to community groups, exhibiting at hospital patient information centres, setting up stands and information points at conferences and providing input at training sessions.

5.5 Patient versions of Guidelines A growing number of SIGN Guidelines exist in patient versions, which are printed in booklet form. Patient information leaflets about the condition, and containing the key points of the full Guideline, may be included in clinical Guidelines for Health Boards to photocopy. Patients often do not usually distinguish between these two types of publications when referring to patient versions. Update: When the survey was carried out, relatively few patient versions of Guidelines existed, the majority being those relating to aspects of heart disease, stroke, diabetes and depression. Thus, a minority of 65 respondents said they had seen patient versions. Since then, around 12 have been produced. SIGN now works more closely with Health Boards and the voluntary sector when patient versions of Guidelines are published, in order to encourage them to

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disseminate these to patients and the public. In addition, the recent development of applications for patient versions of Guidelines will further assist with helping to make patients and the public aware of evidence based recommendations and their application.

5.6 Participation in Guideline Development and Dissemination SIGN puts a great deal of emphasis on securing the participation of patients, carers and patient interest groups in the development and dissemination of its Guidelines. The SIGN website has a page devoted to patient involvement, which says: Involving patients and carers in the development of our Guidelines allows their views and their experiences to complement the evidence and the knowledge and experience of healthcare professionals. Patients, carers and members of the public play an important role in our work. Conclusion and update: While relatively small numbers of respondents had been involved in any area of Guideline development, consultation and review, their ongoing participation is assured and is likely to increase in future. All Guidelines are developed and reviewed and disseminated with the involvement of patients and carers through all the channels explored in this survey. SIGN readily undertakes the fairly lengthy time commitment which this requires and pays all expenses incurred. Further, it should be remembered also that anyone may propose a new Guideline, provided this meets certain criteria, which include:

• Addressing areas of clinical uncertainty, as evidenced by wide variation in practice or outcomes.

• A focus on conditions where effective treatment is proven and where mortality or morbidity can be reduced.

• Addressing clinical priority areas for NHS Scotland • Improving health and tackling inequalities, especially relating to children and

young people • Developing primary and community care • Taking into account the need for the Guideline, as perceived by relevant

stakeholders

At the time of the survey, patient interest groups had been influential in the setting up of Guideline Development Groups for psoriatic arthritis and non-pharmacological management of depression.

5.7 Personal experience of SIGN Guidelines The survey showed that relatively few people had had experience of SIGN Guidelines being applied to their care and treatment. Still fewer had been given copies of Guidelines of patient versions of Guidelines. Those who had had experience of Guidelines being applied mentioned mostly Guidelines for common conditions with long established Guidelines – diabetes, heart disease and breast cancer. The small numbers of people reporting that they knew of Guidelines being applied in their case had mainly experienced this as directed by a doctor, with half as many

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experiencing this as nurse-led. It seemed that other health professionals, notably allied health professionals (AHPs) were beginning to know that Guidelines could be applied to patient care by them. It was reassuring to know that the few people reporting that Guidelines had been applied to their care had experienced this almost as much in primary care as in hospital settings and that they been able to share their experiences informally with family, friends and in support groups. It was also heartening to hear that knowing that Guidelines were being applied inspired confidence in the experience of treatment. Despite these positive experiences, however, it seemed from the small number of responses that asking for a Guideline to be applied did not always evoke a positive response. Conclusion: patients should be given copies of SIGN Guidelines when their diagnosis and course of treatment is being discussed. These should be patient versions where possible, with the full Guidelines being made available (or a weblink reference being given) where possible. Training for health professionals should always include a session on SIGN Guidelines, with SIGN Awareness Volunteers in a good position to complement formal training. Healthcare professionals should be encouraged to offer copies of Guidelines (or links to them) to patients. Ongoing patient and public information from SIGN should also encourage people to check on the SIGN website as to whether there is a relevant Guideline for the care and treatment of their particular condition and ask for it to be applied when in discussion with healthcare professionals.

5.8 The value of SIGN Guidelines for healthcare in Scotland It was heartening to know that, in general terms, over 86% of those responding to the question believed that presence of SIGN Guidelines were making some, or a lot of, difference to healthcare in Scotland. At the same time, however, doubts were expressed about the implementation of Guidelines. People felt that that there was little experience of their applied in individual cases and doubted whether Guidelines were being implemented by Health Boards across Scotland or whether healthcare professionals were sufficiently aware of them. It was also felt that the whole process of Guideline development and implementation, and SIGN in particular, needed better resourcing. In addition, people wanted to see evidence of Guidelines being applied and of the difference they made. Respondents’ call for evidence of the difference made by evidenced-based Guidelines was perceptive in the light of the continuing efforts being made by SIGN to ensure implementation of SIGN Guidelines in Scotland.

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6 Overall conclusion This was a small survey, making it difficult to draw firm conclusions. Nevertheless, it contains observations useful for Guideline application and implementation in Scotland and in particular for SIGN’s ongoing commitment to patient and public involvement. At the same time, It makes a useful contribution to the DECIDE initiative and to the work of G-I N – Guidelines International Network – and in particular to G-I-N Public, which promotes ways to inform and involve the public in clinical guideline activity around the world. Helen Tyrrell, for Voluntary Health Scotland June 2012

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Key messages

• The respondent group in this survey was biased towards older white women, many with experience of illness or disability. Such a group is more likely to be aware of Guidelines and to appreciate their value. SIGN - in common with other NHS bodies – should explore ways of reaching less visible sections of the community

• Awareness of SIGN Guidelines is relatively high in informed patient groups across Scotland, and its core purpose well understood. SIGN should explore ways of conveying the SIGN message more widely, especially within less visible sections of the community

• During the period when this survey was carried out, routes for raising awareness of Guidelines with patients and members of the public were relatively limited. Since then, SIGN has made commendable progress in producing electronic versions and in increasing the number of patient versions of Guidelines. It is likely that paper-based patient versions will continue to be valued. SIGN should also note that there is not yet universal access to the internet in Scotland

• A sizeable proportion of an already informed group is aware of patient versions of SIGN Guidelines. Since the survey was carried out, e-versions of these have been downloaded many thousands of times each month. The recent development of applications for patient versions of Guidelines will further assist with increasing patient and public awareness

• Although relatively few people are involved in key stages of Guideline development and dissemination, SIGN is committed to patient and public participation. It is possible that new ways in which to involve people in the work of SIGN will emerge. Since the survey was carried out, SIGN’s team of Awareness Volunteers has been contributing successfully to informing healthcare professionals of SIGN Guidelines

• It appears that few patients are given copies of SIGN Guidelines. Yet, those

who know that Guidelines are being applied to their healthcare experience increased confidence. Patients should as far as possible be given copies of SIGN Guidelines for their particular condition - preferably patient versions where these are available. Training for health professionals should always include a session on SIGN Guidelines

• Patient and public information from SIGN should encourage people to check on the SIGN website whether there is a relevant Guideline for the care and treatment of their particular condition and to ask for it to be applied when in discussion with healthcare staff

• It is heartening to know from the survey that the great majority of those who

are aware of SIGN Guidelines believe that they are making some, or a lot of, difference to healthcare in Scotland. At the same time, there is an ongoing call for SIGN to ensure implementation and to seek evidence that implementation of Guidelines is making a difference to healthcare outcomes in Scotland

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Appendix 1: Survey questionnaire Voluntary Health Scotland - SIGN survey on public awareness of Guidelines and their implementation Introduction and context for enquiry Dear respondent The Scottish Intercollegiate Guidelines Network (SIGN) (www.sign.ac.uk) was formed in 1993. Since January 2005 SIGN has been part of NHS Quality Improvement Scotland. The purpose of SIGN is to improve the quality of health care for people in Scotland by reducing variation in practice, through the development of national clinical guidelines based on the best evidence. SIGN is governed by a Council whose members represent medicine, nursing, dentistry, pharmacy, allied health professions, social services, academic researchers, the Scottish Government, health service managers, patients and the voluntary sector. Implementation of SIGN Guidelines is the responsibility of each individual NHS Board. However, SIGN is increasingly supporting implementation by getting involved in: - Raising awareness of Guidelines - Linking with national projects and clinical networks responsible for improving services - Developing implementation support tools and resources SIGN is committed to involving patients and interested members of the public in the development of its Guidelines, in raising awareness of new Guidelines and in implementation. Involving patients and carers in Guidelines allows their views and their experiences to complement the evidence gained from research and the experience of health care professionals. Voluntary Health Scotland has as one of its strategic objectives the promotion of best practice in public involvement. VHS aspires to see a broad range of people in Scotland, including those with specific conditions and people from less visible groups, contribute to the development of health policy and health services. Guided by the patient and public involvement priorities of both SIGN and Voluntary Health Scotland, VHS has undertaken this survey into public awareness of SIGN Guidelines and their application in health care in Scotland. Please be assured that any information you provide will be used in strict confidence. Thank you in advance for your participation in this survey. Helen Tyrrell, Voluntary Health Scotland Karen Graham, SIGN Dr Ali El-Ghorr, SIGN To make use of your response we will need to hear from you by the end of April 2011.

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1 Respondent details We encourage you to provide contact details below which will enable us to send a copy of the final report to all participants in this survey. Please be assured that any information you provide will be used in strict confidence. Q1 Name Q2 Email address Q3 Are you: Male ? Female ? Q4 In which age group are you? 0 - 15 16 - 29 30 - 44 45 - 59 60 - 74 75 & over Q5 What is your ethnic group? White Scottish or White British Asian, Asian Scottish or Asian British Black, Black Scottish or Black British Other ethnic background Other (please specify) Q6 Do you have a specific condition or disability? Yes No Q7 If yes, which specific condition? Musculoskeletal Neurological Cardiovascular Mental health Dermatological Gastrointestinal Other (please specify) Q8 Disability? Sensory Physical Learning Other (please specify) Q9 In which area do you live? Ayrshire & Arran Borders Dumfries & Galloway Fife

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Forth Valley Grampian Greater Glasgow & Clyde Highland Lothian Orkney Shetland Tayside Western Isles Elsewhere in the UK Outside the UK If outside Scotland please specify where Q10 Are you responding to this survey primarily as: A patient currently receiving treatment from the NHS A carer of a patient currently receiving treatment from the NHS A health / social care professional An interested member of the public Other (please specify) 2 Awareness of SIGN Guidelines Q11 Have you heard of / are you aware of SIGN Guidelines? Yes No (No further questions if this answer is selected) Q12 What is the emblem / logo that appears on all SIGN Guidelines? Q13 What do you understand the purpose of SIGN Guidelines to be? Q14 Which Guideline(s) have you heard of / are you aware of? Q15 Where was this? (tick all that apply) GP surgery Hospital patient information centre Public Library National media Local media Website Email from SIGN partner (e.g. NHS, VHS) Other (please specify) Q16 In what format was this? (tick all that apply) Alternative language format e.g. Urdu Printed leaflet Electronic format DVD Other (please specify) Q17 Have you seen a patient version of particular Guidelines? Yes No If yes, which one(s)?

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3. Involvement in SIGN (Guidelines) Q18 Have you ever been involved in SIGN (Guidelines) as a member of a Guideline Development Group? Yes No If yes, which? Q19 Have you ever been involved in SIGN (Guidelines) as a member of a Guideline Review Group? Yes No If yes, which? Q20 Have you ever been involved in SIGN (Guidelines) through attending a national Guideline meeting? Yes No If yes, for which Guideline? Q21 Have you ever taken part in a consultation on a patient version of a SIGN Guideline? Yes No If yes, for which Guideline? 4. Awareness of application and use of individual Guidelines for specific conditions Q22 Have you ever been aware that a SIGN Guideline was being followed in the care and treatment which you / your relative were receiving for a particular condition? Yes No If yes, for which condition? What was the Guideline? Q23 Who was using the Guideline for your care and treatment? (tick all that apply) Doctor Nurse Dentist Allied Health Professional (e.g. physiotherapist) Other health professional? Please specify Q24 In what setting was the Guideline being applied? Hospital Primary care / general practice

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Specialist centre / unit (e.g. eating disorder unit) Other setting? Please specify Q25 Were you given a copy of the Guideline? Yes No If yes, was this the Guideline or a patient version of the Guideline? 5. Developing mutuality between clinicians and patients through SIGN Guidelines Q26 Did you feel greater confidence in your / your relative's care and treatment for a particular condition as a result of the relevant Guideline being applied? Yes No Q27 Have you been able to tell other people experiencing the same condition as yourself / your relative about the application of the relevant Guideline to their care and treatment? Yes No Q28 If yes, where? (tick all that apply) Support Group Sharing informally with friends / family Other (please specify) Q29 Have you ever requested that your care should be according to a SIGN Guideline? Yes No If yes, what was the response? Improving healthcare in Scotland Q30 Do you believe that SIGN Guidelines have made a difference to the development of care and treatment of a wide range of conditions? No difference Some difference A great deal of difference Other / additional comments Thank you Thank you very much for taking the time to participate in this survey. The results will be made available through Voluntary Health Scotland and SIGN later this year. If you have left your contact details a copy will be sent to you personally.

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