How Using Social Media Can Help Raise Chronic Kidney Disease (CKD) Awareness

Conclusions • As a non-funded voluntary group, at 3 years post

development, the RPSG has allowed the admin/ research team to raise CKD awareness and prevention using social media successively. This has been achieved through Facebook, BlogSpot and Skype e-sessions where topics are pulled together and hosted by a member of the RPSG research team.

• The RPSG has successfully allowed a platform for interaction and communication also gaining insight from hard to reach populations and the distributing information on CKD to general Facebook users.

• Where peer support programmes within NHS Trusts for CKD/ ESRD patients have been piloted and fully implemented, they should also consider implementing a social media platform to allow shared caring and learning.

• Research is an important essence of the RPSG. The RPSG is the only renal Facebook group that collects research data and publishes information for followers. The RPSG encourage researchers to get involved for potential collaborations.

What makes the RPSG a success? • Facebook allows a good general platform for people to interact • 10 Members to admin team who all bring specific expertise – allowing

good moderating • The RPSG is an ‘Open Group’ • The RPSG (and Facebook generally) appeals to all audiences • The RPSG raises CKD issues and awareness (all stages) • The RPSG organizes/ is involved in research and collaborations to

collect quantitative and qualitative research • The RPSG hosts Skype E-Sessions • The RPSG organizes Social Activities by creating events and advertising

on Facebook Event pages • The RPSG BlogSpot has been formed for non-Facebook users and also

has very up to date information • RPSG users share real life renal experiences in real time from across the

world and this allows members to learn about CKD care from various parts of the world

• The RPSG encourages patients to interact with their local KPAs and to find out how they can be proactive in the care for their fellow peers

• The RPSG does projects to support primary and secondary care

Using Social Media What’s on the RPSG?

The RPSG Facebook page and the RPSG BlogSpot include: 1. Patients sharing real life

experiences and supporting each other.

2. Helpful Links for All (All the latest links, websites, group pages and guidelines/ standards relating to Kidney Care)

3. Video Links that may be of interest

4. Academic/ Research Papers that may be of Interest

5. Research Folder 6. Voluntary Patient Activity

Opportunities 7. A list of Kidney Patient

Associations (KPAs) and related groups and Pages

8. Photographs of various social events

9. Event Posters/ Flyers folder

Aims • The objective of this work is to highlight how using

social media has helped provide insight and awareness surrounding Chronic Kidney Disease (CKD) through the Renal Patient Support Group (RPSG).

• To provide an insight into how the RPSG has successfully allowed a Facebook platform for communication and interaction for patients with CKD and general Facebook/ BlogSpot users.

• To highlight how peer support programmes that are currently implemented in NHS Trusts can improve their programmes utilizing Facebook.

• To highlight how the RPSG has successfully implemented research using social media platforms.

RPSG On-Going Work & Proposals

• Proposed Picnic/ Fun day • Proposed Sponsored Walk • Proposal for Organ Donation Campaign

following Launch of National Kidney Federation (NKF) Black and Minority Ethnic (BME) groups Manifesto (2012)

• Lead Researcher for the RPSG feeding into Health Record Access Initiative

• To implement more qualitative research collecting data on more advanced topics surrounding CKD

Background • The RPSG was initially introduced by three individuals, two renal patients and one

patient carer in (2009). • The initial intention of the RPSG developers was to help support fellow renal patients

following their routine clinical outpatient appointments at the North Bristol NHS Trust. • The RPSG developers knew that it would be a challenge to provide support to fellow

patients face to face in the clinical outpatient setting owing to the limited time. • Having the internet as a resource, the RPSG developers decided to explore an online

platform and the Facebook group was born in October (2009), respectively. • Since the RPSG allowed the developers to interact with patients from in the local NHS

Trust, using Facebook attracted patients, family members, and friends of patients with CKD to gain more insight from across the world, where everyone is able to interact, ask questions and post messages , retrieving instant responses.

• The group now has over 900 members at various stages of CKD and has 10 members to the admin team from the UK, Italy and Australia who give their time and dedication in seeing that the group is facilitated. The RPSG offers online peer support globally, with members sharing and caring. The RPSG is active in research also.

RPSG Research and Projects (2011-2012) • For World Kidney Day (2012), the RPSG hosted a series of E-Sessions on How Using Social Media can raise CKD Awareness in collaboration with NHS Kidney Care • The RPSG also helped co-ordinate a small project with the Renal Patient View (RPV) team for service evaluation • The RPSG has also conducted various surveys to collect data which has been used to feedback to enhance care • In an RPSG survey on ‘what do you find most helpful about the RPSG’, data established that at least 36 % members/ supporters of the RPSG found that its interesting to know that they are not alone. This

survey also highlighted that utilizing the RPSG, 27 % found that communicating with fellow patients and interacting has been beneficial or advantageous. • In an RPSG survey ‘what's the worst thing about being a renal patient’, data established that at least 31 % members/ supporters of the RPSG found that they are afraid of/ have psychological concerns

about the future. Data also highlighted that being a renal patient is something you have to entail for the rest of your life at 23 %. • A survey was also implemented to understand what processes/ strategies people adopt to cope with CKD. This survey highlighted that Learning and Laughing were the main ways that people with CKD

cope with their illness (22 % each). The RPSG is a young group and it is encouraging to find that fellow members (which consists of members from various ages, races and backgrounds around the world), its encouraging to find that 12 % identified the RPSG is a positive way for people to cope, since the RPSG allows a platform for interaction/ communication, retrieving detailed insight on kidney care for a great number of people.

• Another RPSG survey on ‘can social media (not just Facebook) help raise CKD awareness’ established that 89 % members/ supporters found that find social media can help raise CKD awareness. In following , the RPSG BlogSpot was created by the RPSG Lead Research Facilitator and the group is also uses Skype to host e-sessions on different topics relating to CKD, respectively.

RPSG Social Activities and Media Attention

• World Kidney Day & Renal Health Awareness – Bristol Evening Post – 10th March (2011)

• World Kidney Day & Organ Donation – BBC Radio Bristol (Interview with Dr Philip Hammond) (12th March 2011)

• World Kidney Day (2012) Bowling and Coffee Morning Events hosted to raise CKD awareness

Acknowledgments NHS Kidney Care, Bristol Area Kidney Patients Association (BAKPA) and the RPSG Team

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