Lessons learned about patient, carer and public virtual engagement by voluntary sector organisations in Brighton & Hove

Transcription

1 Lessons learned about patient, carer and public virtual engagement by voluntary sector organisations in Brighton & Hove A report on the use of social media as a communications tool by the NHS in Brighton & Hove, working with Gateway Groups, voluntary and community organisations that support less engaged communities. This report published in May 2011 based on activity in January April 2011 Report prepared by Kat Pearce Independent Consultant

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3 1 EXECUTIVE SUMMARY Background Aims of the pilot project Pilot Project activities Project outcomes Lessons learned Recommendations Background to project Aim of the PCT Virtual Engagement Project Project activities Survey of stakeholders Working with Gateway Groups Small grants One-to-one consultancy Barriers to using social media Working with the PCT GP Information Sessions Equalities Act (2010) Consultation Lessons learned Lessons for Gateway Groups Lessons for the PCT Recommendations for the future...29 Page 3 of 32

4 1 EXECUTIVE SUMMARY 1.1 Background NHS Brighton & Hove, the working name of Brighton and Hove City Teaching Primary Care Trust (PCT), was successful in bidding for funding of 30k from the Department of Health s Virtual Engagement Programme to pilot engagement by the PCT through voluntary sector organisations with patients and carers. The pilot project was delivered in Brighton & Hove through Gateway Groups, which are networks of service users and members managed or co-ordinated mainly through voluntary sector organisations and funded by the PCT, in recognition that they deliver two-way dialogue between less engaged communities and the NHS. They enable and support service users to become actively involved in improving local services, whether provided by the NHS, local authority or other providers. The PCT awarded a contract to Sussex Community Internet Project (SCIP) to manage the Virtual Engagement pilot project from January to March SCIP 1 is a social enterprise based in Brighton providing IT services for charities and communities 1.2 Aims of the pilot project The aim of the pilot project was to test the use of social media for communications and consultation by the NHS with patients and carers, through supporting the Gateway Groups and the PCT to develop their skills in adopting and using social media, establish Facebook and Twitter sites and enhance their websites. 1 SCIP Page 4 of 32

5 1.3 Pilot Project activities The pilot project included a range of different activities. An initial survey was undertaken to assess the baseline of social media activity of all involved, which was built on throughout the pilot project. The baseline activity was low with some knowledge but lack of confidence in using social media effectively; however, almost 80% of respondents recognised that social media was an important communication tool and wanted to know more about it. Each of the Gateway Groups involved in this pilot project was at a different stage of readiness and some had yet to embrace new technology. They were all offered small grants plus expert advice and support from social media consultants. All the Gateway Groups took up the opportunity to bid for small grants of up to 1,000 to help them to engage with the pilot project, which funded equipment, upgrades, expert advice and consultation. The consultants main task was to encourage the Gateway Groups to see the potential of social media for engaging with their members and networks and to develop communications and social media strategies and policies. They also provided training for staff, volunteers, trustees and users in the use and application of various social media tools. Due to the vulnerability of many of the user groups or the language barriers, the consultants had to work creatively to find ways of using different social media applications to overcome these challenges. They also found that it was important to identify someone within the group to champion social media and keep it on the agenda. 1.4 Project outcomes Despite the short time span of the project a range of outcomes was achieved from strategy and policy development to setting up websites, Twitter accounts, LinkedIn Groups and linking SMS/text alerts to a website. The PCT was keen to explore the use of social media in its communications work. Three GP Information Sessions on the emergence of GP Commissioning Consortia were planned during February 2011 and social media was used to encourage interest and engagement from the public and Page 5 of 32

6 particularly less engaged communities. As a result of this experience the PCT is keen to continue using social media as a form of communication with patients and carers. Page 6 of 32

7 1.5 Lessons learned This short pilot project has demonstrated that social media can be used by the NHS to consult with the public, including less engaged communities. In particular the existing structure of Gateway Groups in Brighton & Hove offered a firm foundation on which to build this work. Social media is another means of communication which brings new challenges; it does not replace the skills needed to build positive relationships and foster mutual trust and respect in order to bring about meaningful dialogue when engaging with communities. The PCT successfully used Twitter to inform the public about health issues, engage with patients and carers and to facilitate consultation. PCT staff have learnt that it takes time to frame appropriate questions and for the public to formulate thinking and respond; that tweets from the public do not need an immediate response and that a web-site offers a means of delivering considered responses. There is more to be learnt about transparency and moderating negative responses and it is important to recognise that social media is only one tool and that there are members of the public who are unfamiliar with new technology, might be more cynical or averse to it, and may not have the financial means to engage with social media. The pilot project has demonstrated that by offering small grants and expert advice, support and training on the appropriate way to introduce and use social media effectively, voluntary organisations and groups can assimilate social media into their range of communications. It is essential that the expert advice is tailored creatively to the needs of the organisation but it is equally important to recognise the limitations on small voluntary organisations in terms of capacity and resources to respond quickly to new initiatives. The Gateway Groups have each developed skills and expertise in communicating effectively with their user groups and members and to overcome the challenges less engaged communities and individuals face, such as language, disability, poverty, vulnerability and stigma. The pilot Page 7 of 32

8 project has demonstrated that the use of social media has to be adapted sensitively to the needs of less engaged communities if it is to be an effective communication tool. The short timescale did not allow the full potential of this pilot project to be realised. It was vital to develop communications and social media strategies with some of the Gateway Groups, but the limited time and limited resources of many of the groups ran the risk of hindering the impact and sustainability of these strategies. 1.6 Recommendations This pilot project has national application for the NHS, which should develop the use of social media as a tool for engagement with the public and voluntary and community sector, to inform about forthcoming consultation processes, consult with and to identify patient and carer needs. Social media should, however, be only one of the means of communication and, despite its immediacy, requires proper planning and implementation. This could be a powerful tool for the proposed GP Consortia to engage with patients and carers and inform the spending decisions of the consortia. If the NHS nationally wishes to promote the use of social media as a means of communication with less engaged communities then it should consider working in close partnership with the voluntary and community sector, which has a close working relationship with these communities. However, voluntary organisations will require additional and ongoing resources to fulfil this function. The Gateway Groups model in Brighton & Hove, where there is an existing working relationship with the NHS, offered a firm foundation on which to build this work. Locally, the Gateway Groups should be encouraged to continue developing their use of social media to work with the NHS in communicating information to their users and members and enable a two-way information flow. They will, however, require additional investment in capacity building, expert advice and support to integrate social media into their communications toolkit. Page 8 of 32

9 2 Background to project NHS Brighton & Hove, the working name of Brighton and Hove City Teaching Primary Care Trust (PCT), was successful in bidding for funding of 30k from the Department of Health s Virtual Engagement Programme to pilot engagement by the PCT through voluntary sector organisations with patients and carers. This pilot project fits with the government s agenda on community involvement and develops new ways of communicating with NHS users rather than conventional surveys and public meetings. The PCT issued a tender to manage the Virtual Engagement pilot project from January to March 2011, which was awarded to Sussex Community Internet Project (SCIP). SCIP 2 is a social enterprise based in Brighton providing IT services for charities and communities and has championed the use of social media for marketing, campaigning and fundraising by voluntary organisations. Brighton & Hove PCT has had a programme of engagement with patients and carers for some years and contracts with ten key voluntary sector organisations to act as Gateway Groups with less engaged communities (see page 8 and Appendix 1 for list of Gateway Groups). The Gateway Groups are required to set up appropriate two-way channels of communication around health issues to inform their networks, made up of service users and members, and the PCT. The Gateway Groups meet as a consortium for mutual support and to share best practice. Although not a funded Gateway Group, Brighton & Hove Community & Voluntary Sector Forum (CVSF) was included in the pilot project as a gateway in recognition of its vital role as infrastructure support to the general voluntary sector and the other groups in the pilot project. Example of a Gateway Group - The Carers Forum The Carers Forum supports carers to tell their story and have their voice heard. Specially trained carer representatives meet other carers in a similar situation and listen to their views. They then represent carers views to local decision makers at forums, strategic meetings and consultations. 2 SCIP Page 9 of 32

10 Table 1 The Gateway groups are networks within the community led by key voluntary sector organisations. Gateway Group Lead organisation BME Health Forum Get Involved Group Speaking Up Pensioners Action Lesbian, Gay, Bisexual & Transgender People (LGBT) Multi-Faith Health Forum Carers Forum Parent Carers Forum MSLC Parents Forum Mind Live BME Community Partnership Brighton & Hove Federation of Disabled People Speakout (people with learning disabilities) Impetus Consortium of LGBT Groups Brighton & Sussex University Hospitals NHS Trust Chaplaincy Brighton & Hove Carers Centre Amaze Maternity Services Liaison Committee (MSLC) MIND Page 10 of 32

11 3 Aim of the PCT Virtual Engagement Project The aim of the pilot project was to test the use of social media by the NHS with patients and carers, through supporting the Gateway Groups and the PCT to develop their skills in adopting and using social media, establish Facebook and Twitter sites and enhance their websites. This was achieved through one-to-one support by consultants, as well as offering each Gateway Group a small grant of up to 1K to release staff time and/or buy equipment. The Gateway Groups were also encouraged to use social media to engage their members and users in three GP Information Sessions, being run by the PCT across the city during this period, on the issue of the emergence of the GP Commissioning Consortia. The PCT was also planning a consultation from April 2011, on the Equalities Act 2010, and this offered an opportunity to integrate the use of social media into planning the consultation in order to reach less engaged communities. 4 Project activities During the course of the pilot project there were a range of different activities with different stakeholders. An initial survey was undertaken to assess the baseline of social media activity of all involved in the project, including the PCT, and the project built on this. The eleven Gateway Groups were offered up to 20 hours one-to-one support from social media consultants, who had both social media expertise and were familiar with voluntary and community organisations. The aim of this support was to build on the baseline and identify a potential role for social media in the sharing of health information with each of the Gateway Group s networks. The PCT was keen to explore the use of social media in its communications work. Three GP Information Sessions on the emergence of GP Commissioning Consortia were planned during February 2011 and social media was used to encourage interest and engagement from the public and particularly less engaged communities. The PCT also wanted to build the use Page 11 of 32

12 of social media into a consultation on the Equalities Act (2010) from April 2011, and to link with Gateway Groups. 4.1 Survey of stakeholders A survey of stakeholders was undertaken at the start of the pilot project to ascertain a baseline of activity with regard to social media. There were 14 respondents to the survey all 11 Gateway Groups, the PCT, plus Working Together Project, which was also involved in the Virtual Engagement Project, and one of the Gateway Groups completed the survey twice. The survey showed that the baseline on use of social media was generally low. Table 2 Do you have any of the following social media tools already set up? Taken from survey of Gateway Groups, January 2011 Page 12 of 32

13 The majority had their own website and but less than half had a Facebook page or account; otherwise only one organisation, the PCT, had a Twitter account, a Youtube page and a LinkedIn account. Over half of respondents had used social media sites, the most used being Facebook, Doodle and Youtube. Table 3 How confident do you feel about using social media, such as Twitter, Youtube or Facebook? Average scores from 14 responses where respondents were asked to give themselves a score between 1 and 5, where: 1 = not at all; 2 = have some knowledge 3 = use one or two different tools; 4 = regular user; 5 = very confident user Taken from survey of Gateway Groups, January 2011 Page 13 of 32

14 None of the respondents felt very confident at using social media and three had never used it in the workplace, but the majority felt they had some knowledge. Eleven respondents were either part of the Communications Team or made the final decisions about communications within their organisations. The table below shows how the Gateway Groups currently communicate with their users or members. The majority use e mail as a direct mailing mechanism and two-thirds use their website for advertising their services. However, six produce hard copy newsletters and only five regularly e mail their newsletters. Eleven respondents use their websites for handling enquiries a little whilst nine use their websites for advertising their services. SMS/Text communication is only used regularly by two organisations, whilst the majority do not use Facebook, Youtube or Twitter for communication. Page 14 of 32

15 Table 4 Which of the following communications methods does your organisation CURRENTLY use? Data taken from survey of Gateway Groups, January 2011 All respondents thought that their users, members, trustees and other voluntary organisations would use social media a little or a lot, and most would use Facebook or Twitter. However, this varied with the user group, people with disabilities feeling that social media was a liberating force, whilst others felt more threatened by the unknown. When asked in advance to list the mix of means they would use to communicate about the forthcoming GP Information Sessions, ten said they would use e mail and six their websites, four would use conventional printed means and seven would announce it at meetings or events; only one would use Facebook or Twitter. Page 15 of 32

16 Lastly, the survey asked how important it was to know more about social media, and eleven respondents replied that it was either important or vital with two not sure. Table 5 In terms of your current work plans how important do you think it is for you to know more about social media? Data taken from survey of Gateway Groups, January 2011 Page 16 of 32

17 5 Working with Gateway Groups 5.1 Small grants The Gateway Groups were all offered the chance to bid for grants of up to 1,000 to help them to engage with the project. All the groups took up the opportunity, most requesting the maximum amount available. The bids illustrate the range of starting points of the Gateway Groups as the pilot project began and included the following: Up-grading existing websites Releasing staff time to work on the social media project Buying in web skilled consultancy Developing a reference group of service users to advise on development of web and social media Purchase of computer hard and software Paper based survey of service users 5.2 One-to-one consultancy The consultancy process involved identifying the starting point for each Gateway Group, based on the survey and initial interview, and consultants were then matched with a group, according to skills and expertise. The aim of the consultancy was to integrate social media in order to support current goals, fundraising and service delivery. Groups were offered a menu of support which they discussed with the consultant, who then drew up an action plan. The consultant then met regularly with the Gateway Group, often weekly, to implement the action plan. The consultants were able to offer the Gateway Groups a range of support, according to their knowledge and experience of web based communication tools, and the consultants had to creatively tailor their interventions to each individual group. The size of the group and their capacity had a bearing on how much work was possible in the period of the pilot project. The survey showed that seven of the groups had between 1 and 10 paid staff, whilst one group had no paid Page 17 of 32

18 Case study Brighton & Hove Black and Minority Ethnic Community Partnership (BMECP) BMECP brings together Black & Minority Ethnic groups and individuals to have an effective voice. BMECP, which hosts the BME Health Forum Gateway Group, has limited internet presence. It has a number of gateway leaders who are links into the different BME communities in Brighton & Hove. It is a small organisation and responsibility for communication is mainly done through one staff member. Many of the BME communities do not have English as a first language and may not be fluent in English, which creates a further communications problem. The consultant suggested an initial survey of gateway leaders to find out how they communicate with their members but so far there has been little response. She then encouraged BMECP to start a Facebook group for the Health Forum to discuss the setting up of a health day and the general management of the group. They chose to have a closed group and will be inviting trustees, forum members and relevant stakeholders to join. They felt this was an appropriate way forward to enable users to discus planning and organisation rather than specific personal health problems with an administrator to manage the group and open out the discussion. Page 18 of 32

19 member of staff. The pace of development also varied and by the end of the three months, work had only just started with three of the eleven Gateway Groups because of their lack of capacity. Several Gateway Groups were already using volunteers to support or deliver social media activities, such as running a Facebook group. The consultants focussed more on supporting the groups to develop policies and strategies for the effective use of social media, as well as training and setting up applications. Some groups did not have general communications strategies, resulting in unplanned communications and marketing, and this also had to be addressed. There was no evidence that volunteers could offer this combination of skills and expertise. 5.3 Outputs of pilot project The outputs achieved in the three months that this pilot project ran included: Building websites and Facebook pages Staff consultation meetings to prepare ground for using social media and developing a Communications Strategy Developing draft communications strategies and policies for the use of social media Clarifying roles and responsibilities and identifying members of staff to manage/co-ordinate social media, Training on content input and updating of websites Advice on blogging and a blogging plan Changing the use of a Facebook page from campaigning to focus on marketing and fundraising Advice on using Twitter Advice on setting up and using survey monkey Setting up a LinkedIn group Integrating a blog into an existing website Integrating a text alert system into a website. Page 19 of 32

20 Case study MIND LiVE MIND works to promote good mental health care in Brighton & Hove. The first step was to deliver a session about strategic planning for social media, to help identify options and agree goals for staff training. The strategy planning session looked at: Roles and responsibilities of staff members for social media How to promote the site Timeline of events when information is released Code of conduct disclaimers and safeguarding Updating and maintenance of the website Discussion about what the strategy might incorporate in the future eg. LinkedIn, Twitter Staff training on the website included: Updating Monitoring Members use of the Site How to make the site appear in the search Engines How to access the site s statistics How to enrol new members How to create and process surveys Facebook - How to set up a public profile and how to update and maintain a Facebook page Page 20 of 32

21 5.4 Barriers to using social media The consultants were asked to assess the organisations they worked with against a list of potential barriers that could prevent or inhibit the effective use of social media. Of the nine responses, it can be seen that the lack of a Communications Strategy and communications skills in general are the biggest barriers to effective use of social media; closely followed by an organisational culture which may resist such change and lack of capacity. Staff from one organisation were concerned that they would be forced to use Facebook and Twitter, which they did not feel would be of any use. However, the consultative approach encouraged them to embrace and add new ideas to their existing communications tools. Table 6 What do you think are the barriers that you face in making effective use of social media? Barriers to social media low IT skills organisation culture IT low priority management chain lack of capacity no Comms strategy lack of comms skils Page 21 of 32

22 Case study LGBT Gateway Group A consortium of Lesbian, Gay, Bisexual & Transgender groups from Brighton & Hove. Organisational structure can pose a problem for effective communications but the LGBT Gateway Group successfully managed to overcome this. They asked the consultant to attend a strategic planning day with the staff team to advise on the preparation of a workplan for the use of social media and to prepare a job description for a new team member to reflect this. The consultant was also asked to produce a blogging plan, give blogging advice to the new staff member, and further work on Twitter, SurveyMonkey and forums. There were a range of other issues that needed to be addressed before groups felt confident and safe to use social media applications. Some of the groups worked with very vulnerable users and felt that the issue of accessibility of social media needed to be addressed, or that they required protection before going public on Facebook or a blog; others were concerned about ensuring proper conduct and respect for others. Page 22 of 32

23 Case study Speaking Up provided by Speak Out Speak Out provides advocacy to people with learning disabilities. Some of Speak Out s service users had expressed hesitation over using social media due to privacy and e-safety issues, whilst Facebook and Twitter are text heavy and confusing to navigate for others. The consultant advised them how social media could help address organisational goals such as: Influencing local service providers Influencing commissioners Support engagement in the face of spending cuts Support the recruitment and consultation of volunteers Promote charged-for learning disability awareness training Feeding back to the PCT on health issues and services. They agreed that the information and views shared in Speak Out s advocacy meetings could reach a wider audience and enable greater dialogue through the use of appropriate channels of social media, that it should fully integrate into Speak Out s existing activity, and be sustainable. The consultant offered staff an Introduction to Social Media session and further training in video reporting and audio podcasting for advocacy group representatives. Specific attention was paid to the accessibility of equipment as social media hardware and software can be difficult and confusing to use for some service users; however more immediate sensory experiences are achievable through simple use of video and sound recording and dissemination online. Page 23 of 32

24 A number of the Gateway Groups were aware of the need for basic staff training to improve on-line skills and dispel the feeling of personal threat from going live. One of the groups was able to make more strategic use of social media for fundraising, campaigning and user support as a result of the consultancy. Case study Parent Carers through Amaze Amaze supports parents of children with special needs and disabilities. Amaze had a website, a Twitter account and was using Facebook to campaign and provide information and support to parent carers, but was concerned about how it could provide a safe space for parent carers. During the consultancy a new Chief Officer started in post and recognised the need to integrate the use of social media into an organisational Communications Plan, bringing together fundraising, campaigning and user support. As a result the consultant helped to reposition the Facebook page as a marketing and fundraising channel rather than a consultation forum, and a LinkedIn group was created and populated with key opinion formers for consultation. He also offered training on Facebook, LinkedIn, and strategic use of e mails to a small group of key stakeholders. Page 24 of 32

25 6 Working with the PCT 6.1 GP Information Sessions Three GP Information Sessions on GP Commissioning were held at separate locations across Brighton & Hove during the course of the project with the aim of enabling the public to have a better understanding of the emergence of GP Commissioning Consortia. They had been publicised through the normal channels of local media, GP surgeries, community newsletters, schools and the CVSF e-bulletin. The use of social media developed over the course of the three sessions as the PCT staff became more familiar with it and understood its potential. It felt quite exciting as it was the first time that we had done it and we didn t know if it would work. It demonstrated an interest by the public in broader views. It was interactive and interesting and the GPs were impressed. Martin Campbell, Head of Engagement Team, NHS Brighton and Hove In the week before the first session the PCT tweeted on its site to generate interest in the issue and encourage people to attend the session. The Gateway Groups were also encouraged to use social media to encourage attendance. A recurring theme raised by the public at the first session, concerning GPs views on the Government s plans for GP Commissioning Consortia and the state of the NHS, was picked up by the PCT which decided to post the question, If the NHS is broken, what needs fixing? on its Twitter account which had 1,800 followers. By the second meeting some responses had been tweeted. Six questions had been posed on Twitter before the event with a further two during the event and all these tweets were addressed by the GPs on the platform. The third session saw Twitter being projected live on the screen so that all the audience could see what was happening. Further Page 25 of 32

26 questions from the public had been tweeted since the second session and and one new tweeted question was asked during the final session. PCT staff have learnt from this experience that it takes time for the public to formulate thinking but that Twitter does offer an effective channel for communication on policy issues. It requires adequate lead-in times and planning to frame the questions. There is more to be learnt such as: Transparency eg. projecting Twitter live, and how to moderate highly negative responses in a public setting. There is no need to urgently respond to all tweets in full. The PCT tweeted back that full responses would be available on the PCT website in due course, which allowed the GPs time to formulate detailed responses rather than character-limited tweet responses. It is also important to recognise that social media is only one tool and that there are members of the public who might not be so familiar with new technology, might be more cynical or averse to it, and may also have less financial means to engage. 6.2 Equalities Act (2010) Consultation When the pilot project was set up the PCT was required to consult on the Equalities Act (2010), which came into effect on 1 st April The PCT s Communications & Engagement Team was planning to use social media as one of its communication tools and to work with the Gateway Groups to test out the benefits of social media for this type of consultation. However, the government has since changed the requirements of the Act and this consultation will no longer take place. 6.3 Future use of social media for public engagement The PCT intends to continue to develop the use of social media as a regular communications tool in its future engagement with the public on policy and service issues. Page 26 of 32

27 7 Lessons learned The Virtual Engagement Project was funded nationally by the Department of Health and this report describes how a pilot project was run and developed in Brighton & Hove. The adoption of new technology is not straightforward; there are those who feel completely confident and capable of using new applications and others who feel intimidated and do not understand its potential, with a spectrum in between. The approach of this pilot project was to identify the different starting points and needs of all participants through a survey and initial interview, and then provide the appropriate support and tools. SCIP, through the consultants, was able to bring the combined expertise of social media plus experience of working with voluntary and community organisations and vulnerable service users. It therefore takes time to embed the use of new technological means of communication, with adequate needs identification, training and familiarisation. The lessons learned from the pilot project applied to all the organisations involved, including the PCT, and have universal application locally and nationally; unfortunately, the limited three month time period of the project means that most of the work had not reached its natural conclusion at the time of writing this report. 7.1 Lessons from working with the Gateway Groups Each of the Gateway Groups involved in this pilot project was at a different stage of readiness and development and some had yet to fully embrace new technology. Social media is another tool for communication which brings new challenges; it does not replace the skills needed to build positive relationships and foster mutual trust and respect in order to bring about meaningful dialogue when engaging with communities. The pilot project has shown that social media has to be adapted sensitively to the needs of less engaged communities if it is to be an effective communication tool. The Gateway Groups have each developed skills and expertise in communicating effectively with their networks of service users and members, and to overcome the challenges less engaged communities and Page 27 of 32

28 individuals face, such as language, disability, poverty, vulnerability and stigma. The manner in which social media works, xxx, mirrors the complex networks that the Gateway Groups work with and offers another useful communication tool. This pilot project has demonstrated that by offering small grants and expert advice, support and training on the most appropriate way to introduce and use social media effectively, voluntary organisations can assimilate social media into their range of communications. Effective use of social media requires an organisation to have a relevant policy agreed by the board of trustees as well as a clear implementation plan with clarity of role and purpose. It is essential that the expert advice combines expertise in social media, as well as experience of working with voluntary organisations and vulnerable service users, and is tailored creatively to the needs of the organisation to enable the potential of social media to be realised in engaging communities with health issues. It is equally important to recognise the limitations on small voluntary organisations in terms of capacity and resources to respond quickly to new initiatives. 7.2 Lessons for the PCT and NHS The short timescale did not allow the full potential of this pilot project to be realised. It was vital to develop communications and social media policies and strategies with some of the Gateway Groups, but the limited time and limited resources of many of the groups ran the risk of hindering the impact and sustainability of this element of the work. The NHS experience demonstrated that it is possible to use social media to inform the public about health issues, engage with patients and carers and to facilitate consultation. Whilst communication through social media can be immediate, adequate time needs to be given to planning engagement, consultation and content, with adequate lead-in and response times. Some user groups and members of the public are wary of or do not use social media applications viz. frail older people, people with learning disabilities, and Page 28 of 32

29 others do not have the financial means to engage. For others there may be language and communication barriers, therefore creativity is vital to encourage these people and communities to use social media eg. using video on Youtube with people speaking their own language or for people who cannot read. 8 Recommendations for the future This short pilot project has demonstrated that social media can be used by the NHS to consult with the public and to communicate with less engaged communities. This has national application for the NHS, which should consider developing the use of social media as a tool for engagement with the public, to inform, consult with and to identify patient and carer needs. Social media should, however, be only one of the means of communication and, despite its immediacy, requires proper planning and implementation. This could be a powerful tool for the proposed GP Consortia to engage with patients and carers and inform the spending decisions of the consortia. If the NHS nationally wishes to promote the use of social media as a means of communication with less engaged communities then it should consider working in close partnership with the voluntary and community sector, which has a close working relationship with these communities. However, voluntary organisations will require additional and ongoing resources to fulfil this function and specific expertise to reach less engaged communities. The Gateway Groups model in Brighton & Hove, where there is an existing working relationship with the NHS, offered a firm foundation on which to build this work. In Brighton & Hove the Gateway Groups should be encouraged and supported to continue developing their use of social media to work with the NHS in communicating information to their networks, service users and members, and enable a two-way information flow. Gateway Groups have been successful in enabling the NHS to engage with more marginalised communities and already receive specific resources to fulfil this role. If the NHS locally wishes to ensure that it continues to meet the needs of the public, and less engaged communities in particular, through the use of social media Page 29 of 32

30 then the Gateway Groups will require additional investment in capacity building, expert advice and support to integrate social media into their communications toolkit. There will be a final survey conducted in summer 2011 of participants in the pilot project to assess what progress has been made in the use of social media to engage with communities on health issues, and the Gateway Groups themselves will be asked to identify barriers to effective participation. A dissemination event will also be held. Page 30 of 32

31 Appendix 1: List of Gateway Groups Gateway Groups are networks of service users and members within the community, led mainly by key voluntary sector organisations. They enable and support service users to become actively involved in improving local services, whether provided by the NHS, local authority or other providers. Gateway Group BME Health Forum Get Involved Group Speaking Up Pensioners Action Lesbian, Gay, Bisexual & Transgender People (LGBT) Multi-Faith Health Forum Lead organisation BME Community Partnership Brings together Black & Minority Ethnic groups and individuals to have an effective voice Brighton & Hove Federation of Disabled People Offers advice and support to member organisations and individuals on disability issues Speakout Provides advocacy to people with learning disabilities Impetus Supports local organisations or individuals experiencing disability and/or disadvantage Consortium of LGBT Groups Brings together organisations supporting LGBT people Brighton & Sussex University Hospitals NHS Trust Chaplaincy Carers Forum Parent Carers Forum Brighton & Hove Carers Centre Supports those caring for partners, relatives or friends Amaze Supports parents of children with special needs and disabilities Page 31 of 32

32 MSLC Parents Forum Mind Live Maternity Services Liaison Committee (MSLC) Brings together professionals and parents to influence the way maternity services are designed and to ensure that the needs and expectations of local people are being met. getinvolved/maternitycare/ MIND Works to promote good mental health care in Brighton & Hove and Sussex Page 32 of 32