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The Renal Patient Support Group (RPSG) – A ‘place’ where Awareness and Research Meet Administration and Research through a Leading Social Media Platform – Co-Founders Reflections on the First 5 Years (2009-2014) *Shahid Muhammad1, John Gardner1, Vicky Gardner1, for the Renal Patient Support Group (RPSG), England UK World Kidney Day (2015) Special – Kidney Health For All
1 Co-founders
THE RPSG - A ‘PLACE’ WHERE AWARENESS AND RESEARCH MEET Introduction
Aim
Chronic Kidney Disease (CKD) is increasingly recognized as a global public health problem and a key determinant of poor health outcomes. There is compelling evidence that disadvantaged communities, (i.e., those from low-resource, racial and minority ethnic communities), and/or indigenous and socially disadvantaged backgrounds, suffer from marked increases in the burden of unrecognized and untreated CKD. Although the entire populations of some low- and middle-income countries could be considered disadvantaged, additional factors creates a position of extreme disadvantage for certain population groups (those living in some rural areas, young, women, the elderly, etc.). The fact that even in developed countries, CKD has increased and outcomes suggests that there is much to learn beyond the traditional risk factors contributing to this irreversible chronic illness and associated complications (Aviles-Gomez et al. 2006;Fogo 2007;Garcia-Garcia and Jha 2014). In this context, using Social Media (SM) can help to support CKD patients in various manners. However, at present, there is little formal evidence that highlights how an understanding of SM platforms like Facebook can raise CKD awareness and support health professionals and researchers.
RPSG General Activities
RPSG Academic and Professional Collaborations All healthcare professionals and researchers are interested to know and understand what makes healthcare practice better and also want to be better at inviting patients and the general public involved in research. Whether actively designing studies, recruiting and following up patients or analysing data for publication, all recognise the need for new knowledge and understanding to guide achievement and practice (Gaw et al. 2014). The RPSG has been active on academic and professional collaborations. In addition to RPSG representation at conferences, some of the RPSG academic and professional collaborations have also included: The RPSG at 2000 members with Bristol Multi-Faith Forum (BMFF), Newsletter publication (2014), Research Grant Collaboration (2013-14) in collaboration with the University of Hertfordshire and Queen’s University, Belfast, The RPSG and Queen’s University Belfast book chapter collaboration on Use of Social Media in Renal Care for EDTNA/ ERCA E-Nephrology Handbook (2014), The RPSG, Brunel University London and Shifa Psychological Services, Canada on a paper and poster collaboration surrounding Islam and Coping with Chronic Illness (2014), The RPSG and University College London (UCL) and Queen’s University, Belfast on a paper Collaboration surrounding The Importance of Point of Care Testing in Community Pharmacy (2014), the RPSG and Renal Information Exchange Group (RIXG) on a data collection collaboration exploring how patients would like to receive health information (2014) and a RPSG and London South Bank University (LSBU) poster collaboration on the Use of SM for people with Long-Term Conditions to Facilitate Learning in Higher Education. In addition, the RPSG is now also supporting researchers with potential recruitment for a clinical trial between Manchester Childrens Hospital UK and the University of Birmingham, UK.
What’s on the RPSG
About the RPSG
How has Social Media Helped? Prior to (2005), electronic communication and identifying health information was primarily via brochures, books, leaflets and email. SM (especially Facebook) has become a household name over the past couple of years, with users around the globe. Social networking sites facilitate maintaining “virtual relationships” with contacts from both one’s personal and professional lives. Retrospectively, in the clinical setting and through traditional groups, people have helped one another adjust to the experience of CKD by exchanging informational, emotional, and instrumental forms of support (Huh et al. 2013a; Huh et al. 2013b). Informational support (e.g., exchange of advice, explanations, research, opinions, and experiences) helps patients understand and learn to cope with their CKD (Muhammad et al. 2014; Involve 2012; Huh and Ackerman 2012a; Huh et al. 2012b; Huh et al. 2012c). In contrast, emotional support can strengthen interaction and self-esteem as well as reduce distress such as anxiety, concerns, empathy, and provide reassurance. Instrumental support surrounds the exchange of practical assistance and material goods (e.g., financial support, transportation, or help with household chores). Using SM forms (e.g., forums, chat rooms, message boards, blogs, and online support groups) are now opening ways in which patients with CKD gain supportive insights to kidney disease and communicate more generally. Rapid growth in the acceptance of SM support groups have unbolted a new channel for patients and the public to interchange vital methods of peer support and gain perspectives on the importance of disease awareness and their involvement in research (Huh et al. 2013a; Huh et al. 2013b; Prainsack 2014).
Involvement and engagement activities through the RPSG have provided a great opportunity to discussions about how patients, professionals and researchers should work in partnership to find answers which could improve disease and lives of patients with CKD. Being involved also provides potential to become a model for shared decision-making, as increasing circumstantial evidence indicates that people who get actively involved in helping researchers with the design and other parts of the research process have a much greater understanding of their health and well-being (Gaw et al. 2014). To provide a broad understanding on some of the research activities the RPSG have supported and coordinated, the following summarizes some examples: prompting awareness and use of Renal Patient View (RPV) (now Patient View) to access records, NHS Kidney Care, survey support for the Renal Information Exchange Group (RIXG), National Kidney Federation (NKF), UK, Kidney Health UK, supporting CloseUp Research to involve patients in kidney video-based project, supporting a Kidney Project in collaboration with colleagues at the University of Brighton, supporting a Kidney Project at the University of Southampton, survey support for Efficacy and Safety of Prescribing in Transplantation (ESPRIT), supporting a Records Access initiative for the Royal College of General Practitioners (RCGP), survey support for the Picker Institute, UK and survey support for Qualitative and Quantitative Fieldwork Services. The RPSG activities continue; the administration and research team are always open to supporting projects and collaborations.
Providing a Chronic Kidney Disease (CKD) example, the aim of this article is to provide an understanding of how the Renal Patient Support Group (RPSG) 1) raises CKD awareness for all, 2) supports health professionals and researchers and 3) provide a reflection on the first 5-years (2009-2014) in support of World Kidney Day (2015) – Kidney Health for All.
The RPSG is a voluntary/ non-funded SM Facebook platform, which is a patient-carer led initiative established in (2009) by two long term renal patients and one long-time carer in Bristol City, England UK. The initial intention of the RPSG co-founders was to help all with CKD, and family members following their routine clinical outpatient appointments. The RPSG founders explored an online platform and Facebook provided a fitting choice as a SM platform recognized on an international scale which allows the sharing of ‘real time’ lived experiences. Since the RPSG is mainly a Facebook platform, this lends itself well to raising CKD awareness, allowing members to share real-life stories and inviting research collaborations. Using SM also offers opportunity to researchers and health care providers to partner with patients as never done so before. Unlike other renal Facebook groups, the RPSG is also research active. The RPSG now has 10 members who form the administrative/ research team with representation from the UK, Europe, Australia and USA who are responsible for facilitating the group (Muhammad et al. 2014).
RPSG Social Activities and Media Attention In the time the RPSG has been facilitated, co-founders have also promoted and been involved in several social activities and supported kidney disease awareness and these have been captured to gain media attention. Some activities have included: World Kidney Day and Renal Awareness – Bristol Evening Post (2011), World Kidney Day & Organ Donation – BBC Radio Bristol (2011), Skype and World Kidney Day E-Seminars (2011- 2012), Bristol Area Kidney Patients Association (BAKPA) World Kidney Day Bowling and Coffee Morning Events to raise CKD awareness (2012), the National Kidney Federation (NKF), Kidney Life Newsletter (2012), held a Picnic/ Fun day (2012), RPSG and Meshia Hope Project Collaboration (2013) and Haemodialysis Access Safety Awareness (2013). The RPSG was also a formal collaborator for the Lord Mayor, Bristol Blood and Organ Donation Campaign (2013 - 2014) and raised further CKD and organ donation awareness via BCFM and Ujima Radio stations (2014). The RPSG was also involved at the Barrios Film Fiesta, Bristol (2014).
All RPSG members including patients, parents/ guardians, siblings, carers, relatives and friends have a ‘place’ to share real life experiences and supporting one another via a ‘closed’ and confidential group wall; members can choose to click to subscribe to notifications. There is also a helpful links for all which has all the latest links, websites, group pages and guidelines/ standards relating to kidney care; there are also event pages, video links that may be of interest and an array of academic research papers that may be of interest. The RPSG also has a research folder consisting of supported collaborations and projects. Over the first 5-years, the RPSG team have been involved in supporting the dissemination of data collection projects on different topics summarizing results, and also highlight different voluntary patient activity opportunities (awareness and research). There is also a list of Kidney Patient Associations (KPAs) and photograph folders of various social events, seminar/ conference summaries.
RPSG Representation at Conferences It is important that the full range of people affected by health and social care research have opportunities to get actively involved in and influence awareness and research. Including people and groups who may feel they do not often have these opportunities – sometimes referred to as marginalised or seldom-heard – or people who feel overlooked or ignored by mainstream society (Involve 2012). In this regard, a wide majority of RPSG members have become more empowered to drive changes CKD and related healthcare issues in their own ways. Using SM has promoted cofounders, members of the administration and research team to highlight activities at various platforms; these include presenting posters at the Excellence in Paediatrics (EiP), London (2010), (EiP) Madrid, Spain (2012), and Dubai, UAE (2014), an RPSG paper on Using Online Methods for Data Collection was presented at the 2nd Congress Paediatric Nursing Association of Europe (PNAE), Glasgow, Scotland (2013) and the RPSG was represented at the Westminster Health Forum, House of Commons, London (2013) and the Institute of Biomedical Sciences Congress, (2013). The co-founders were invited to attend the EHI-Live, (2013), where insight on using social media to promote renal health was promoted and members of the RPSG team were also invited to represent at the Healthcare and IT National Conference, Manchester (2014). At the European Working Group on the Psychosocial Aspects of Children with Chronic Renal Failure (EWOPA), Rotterdam (2013), one of the co-founders presented the findings of collaborative research. The RPSG also presented a paper on Supporting Patients with Chronic Kidney Disease through Social Media at the STTIEC Regional Conference, Gothenburg Sweden (2014) and presented the outcome of the Lord Mayor of Bristol’s blood and organ donation campaign at the ESPN/ EWOPA Joint Congress, Porto, Portugal (2014). RPSG colleagues also had a poster presentation on the Use of SM for People with LongTerm Conditions to Facilitate Learning in Higher Education – A CKD Perspective at the Involve Conference (2014). The RPSG team also disseminated posters on Coping with Chronic Illness, Chronic Kidney Disease (CKD) – A Social Media Perspective and Bridging the Awareness Gaps in Chronic Kidney Disease (CKD) – Education, Education, Education in Primary Care at the Health Awareness Event, Bristol City (2014). All RPSG work and representation at conferences has been warmly received.
Reflection on the First Five Years (2009-2014) The most challenging periods for the RPSG was its initiation when co-founders did not anticipate that the group will get passed 10 members. In May (2013), the RPSG team implemented a small poll asking fellow members would they prefer to have the group ‘open’ or ‘closed?’. (52 %) selected the option closed and (39 %) selected open. As a result the RPSG has been a ‘closed group’ for a year thus far, which provides confidence for members to discuss sensitive topics without non-group members viewing comments. The RPSG is now into its 5th-year with an increasing international membership where patients, carers, professionals and researchers from various institutions gaining more understanding of raising CKD awareness and research for the wider world is becoming increasingly important. The RPSG has provided a ‘place’ for people with CKD making it an informative space for patients and their families and friends have become more empowered to make formal healthcare decisions. In addition, the RPSG has provided research opportunities in arrangements that are socially supportive and represent the widest of intrigues. Recent project collaborations underway/ near completion include: (1) Can Social Media (SM) help raise Discrimination and Ignorance Awareness for People with Long Term Conditions (LTCs) providing a Chronic Kidney Disease (CKD) example and Assistive Technology (AT) for People with Disabilities and (2) Electronic Patient Records (EPR), Library Services (LS) and Multidisciplinary Team (MDT) Meetings – Is it not time to Integrate Primary Care for the better. As the RPSG has grown in membership, the co-founders wanted to see that the platform can help improve healthcare literacy, enabling all to engage with data and material that is relevant to the CKD population, and have a ‘place’ to connect with others who have related experiences or expertise, or by facilitating mutual support. The RPSG is also a specific example of Participatory Medicine as described by (Prainsack 2014).
References • • • • • • • • • • • • • • •
Allan Gaw, Derek Stewart, Philip A Kalra, Fiona O’Neill (2014). What I Tell My Patients about Clinical Research, British Journal of Renal Medicine; Vol 19 No 3 Aviles-Gomez, R., Luquin-Arellano, V.H., Garcia-Garcia, G., Ibarra-Hernandez, M., & Briseno-Renteria, G. (2006). Is renal replacement therapy for all possible in developing countries? Ethn.Dis., 16, (2 Suppl 2) S2 Fogo, A.B. (2007). Mechanisms of progression of chronic kidney disease. Pediatr.Nephrol., 22, (12) 2011-2022 Garcia-Garcia, G. and Jha, V. (2014). Chronic kidney disease in disadvantaged populations. Pediatr.Nephrol. Hartzler, A. & Pratt, W. (2011). Managing the personal side of health: how patient expertise differs from the expertise of cl inicians. J.Med.Internet.Res., 13, (3) e62 Huh, J. & Ackerman, M.S. (2012a). Collaborative Help in Chronic Disease Management: Supporting Individualized Problems. CSCW., 2012, 853-862 Huh, J., Hartzler, A., Munson, S., Anderson, N., Edwards, K., Gore, J.L., McDonald, D., O'Leary, J., Parker, A., Streat, D., Yetisgen-Yildiz, M., Pratt, W., & Ackerman, M.S. (2012b). Brainstorming Design for Health: Helping Patients Utilize Patient-Generated Information on the Web. CSCW. 11-12 Huh, J., McDonald, D.W., Hartzler, A., & Pratt, W. (2013a). Patient moderator interaction in online health communities. AMIA.Annu.Symp.Proc., 2013, 627-636 Huh, J., Patel, R., & Pratt, W. (2012c). Tackling Dilemmas in Supporting "The Whole Person" in Online Patient Communities. Proc.SIGCHI.Conf.Hum.Factor Comput.Syst., 2012, 923-926 Huh, J., Yetisgen-Yildiz, M., & Pratt, W. (2013b). Text classification for assisting moderators in online health communities. J.Biomed.Inform., 46, (6) 998-1005 INVOLVE: Strategies for Diversity and Inclusion in Public Involvement (2012) (available at http://www.invo.org.uk/posttypepublication/strategies-for-diversity-and-inclusion-in-public-involvement/) (accessed December 2014 INVOLVE: Guidance on the Use of Social Media (2014) (available at http://www.invo.org.uk/posttypepublication/guidance-on-the-use-of-social-media/) (accessed December 2014) Muhammad S, Allan M, Ali F, Bonacina M, Adams M (2014). The Renal Patient Support Group (RPSG) – Supporting Patients with Chronic Kidney Disease (CKD) through Social Media – Patient Perspective. J Ren Care. Sep; 40 (3):216-8 Prainsack, B. (2014). The powers of participatory medicine. PLoS.Biol., 12, (4)
Summary The aim of this article was to provide an understanding of how the RPSG 1) raises CKD awareness, 2) supports health professionals and researchers and 3) provide a reflection on the first 5-years (2009-2014) in support of World Kidney Day (2015) – Kidney Health for All. SM groups are becoming more widely used as a first port of call for information and potential research collaborations. Whilst professionals have become members of the RPSG, they are not as ‘active’ and this is an element that the RPSG co-founders would like to see develop further. The RPSG continues to raise awareness and provide opportunities for members to actively engage and get involved through both its Facebook and BlogSpot platforms. Although there is developed Guidance on the Use of Social Media (Involve 2014), interestingly RPSG co-founders have been supporting research and collaborations since the group was founded in (2009). Whilst there is some research highlighting the time and effort it takes to organize a well-moderated SM support group and how a team administers and supports research (Hartzler and Pratts 2011; Huh and Ackerman 2012a; Huh et al. 2012b; Huh et al. 2012c; Huh et al. 2013a; Huh et al. 2013b), it is with thanks to fellow RPSG administration/ researchers and members that the co-founders have found first 5-years fulfilling; the RPSG is a group that is unique and quite literally a ‘place’ where awareness and research meet.
