Study protocol: responding to the needs of patients with IgA nephropathy, a social media approach

Study protocol: responding to the needs of patients with IgA nephropathy, a social media approach Background: IgA nephropathy is the most common cause of glomerulonephritis in the Western world and predominantly affects young adults. Demographically these patients are the biggest users of social media. With increasing numbers of patients turning to social media to seek information and support in dealing with their disease, analysis of social media streams is an attractive modern strategy for understanding and responding to unmet patient need. Methods: To identify unmet patient need in this population, a framework analysis will be undertaken of prospectively acquired social media posts from patients with IgA nephropathy, acquired from a range of different social media platforms. In collaboration with patients and members of the clinical multidisciplinary team, resources will be created to bridge gaps in patient knowledge and education identified through social media analysis and returned to patients via social media channels and bespoke websites. Analysis of the impact of these resources will be undertaken with further social media analysis, surveys and focus groups. Conclusions: Patients with chronic diseases are increasingly using social networking channels to connect with others with similar diseases and to search for information to help them understand their condition. This project is a 21st century digital solution to understanding patient need and developing resources in partnership with patients, and has wide applicability as a future model for understanding patient needs in a variety of conditions. Key words: IgA nephropathy, patient need, social media Received: August 29, 2017. Editorial decision: October 4, 2017 V C The Author 2017. Published by Oxford University Press on behalf of ERA-EDTA. This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/ licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited. For commercial re-use, please contact journals.permissions@oup.com Downloaded from https://academic.oup.com/ckj/article-abstract/11/4/474/4654835 by Ed 'DeepDyve' Gillespie user on 07 August 2018 Using social media to identify unmet patient need | 475 Introduction Inial invesgator-led paent collaborator focus group Pre-study meeng to inform themac framework analysis planning We are living in a digital age. The growth of the Internet and the advent of social media has revolutionized healthcare by provid- ing new communication channels, allowing patients access to Themac analysis of Themac analysis of Phase 1 support and health-related information [1, 2]. It has changed Facebook data Twier & Instagram data the way patients are able to search and exchange health-related information in new and diverse ways [3]. Online health com- Paent & MDT collaborator meeng to review analysis munities existed before social media as message boards, discus- of phase 1 & plan resources to be development sion forums, websites and interactive blogs that were ‘governed’ by individuals, traditionally termed ‘webmasters’ [4]. Development of websites and resources in response Large-scale, public, social networking sites deviate from this to the analysis undertaken in phase one model as interactions occur between users, rather than Phase 2 through/via a ‘webmaster’. These sites attract more patients Paent and MDT collaborator meeng to review and and produce vast amounts of peer-to-peer interactions, with refine resources before publicaon on websites and unprecedented potential to extract novel information to study distribuon through social media channels content at scale [5]. ‘Social media’ is a term that refers to content that is driven Publicaon of resources on websites and distribuon through social media channels by users and shared on social networking platforms. The ‘media’ may exist in different forms across a wide range of plat- Assessment of impact of resources, through website forms. Different social network sites exist to support the shar- usage stascs, analysis of interacon with social Phase 3 ing of different kinds of media, for example, blogging (e.g. media posts and across social media plaorms Medium), microblogging (e.g. Twitter), video sharing (e.g. Fig. 1. Study protocol timeline. MDT, multidisciplinary team. YouTube), photos or pictures (e.g. Instagram), or online com- munities, which host most kinds of media (e.g. Facebook or Google Communities). These sites facilitate interactions patient need on quality of life, satisfaction and experience between individuals, with users able to choose whether their has not been well studied. accounts and posts remain private or public. Studies suggest IgA nephropathy (IgAN) is a rare disease, but is the most that 70% of Internet users use at least one form of social media common cause of glomerulonephritis in the UK and the [6], and each social media platform may play a unique and dif- Western world. IgAN tends to affect younger patients, who are fering role in engaging patients [7–9]. The volume, diversity and more likely to be active on social media than older patients. The interrelated nature of information that passes through social nature of the questions patients pose, related to IgAN, are not media channels make them rich data resources and medical known and the possibility of systematically analysing freely professionals are already starting to explore the nature of available social media posts to organically understand unmet patient interactions on these sites [10]. patient needs is an attractive prospect. There are currently no specific treatments shown to be effective for all patients with Social media, an outlet to exchange information IgAN and patients lack access to information to manage their The numbers of patients with long-term health conditions is condition. This project was developed from preliminary work increasing. Over 15 million people have a long-term health con- which identified that large numbers of younger patients with dition in the UK and the Department of Health has identified IgAN use social networking sites to try to find information about the need to provide better access to information for patients their condition, to search for fellow patients and resources, and and improve communication with patients using technology to look for clinical trials they may be able to join. [11]. Traditionally, patients with chronic illness obtain informa- The objectives of this project are: tion relating to their condition from healthcare providers, who (i) To identify the unmet needs of patients with IgAN through often focus on the clinical impact of disease and may ignore the analysing data from social media platforms (Twitter, effects on daily life or emotional well-being [12]. The rise of Instagram and Facebook). social media has allowed patients to exchange health-related (ii) To develop resources to meet the information needs of information [1, 2], which satisfies their information needs [9]. patients and disseminate these to patients through social Patients may seek information for any number of reasons, media channels and website hosting. including to: prepare for or decide upon treatment; manage (iii) To assess the effectiveness of resources developed in symptoms; understand potential adverse effects; reduce uncer- meeting the information gaps for people with IgAN. tainty; and fill knowledge gaps [13–15]. In addition, patients (iv) To explore and understand how social media can be used draw from enactive mastery experience (positive feedback as a as a communication tool to improve patient experience, result of posting), vicarious experience (other patients stories) understanding of disease, networking and peer support. and social persuasion (positive feedback, conversations), which contributes to an increase in self-efficacy [9]. Web- based resources and responsive interventions have had little Materials and methods clinical impact on outcomes for patients. Indeed studies This research study is a qualitative data mining exercise to in chronic back pain and in cancer survivors show that web- identify and respond to information gaps using publicly avail- based interventions have variable impact on ‘medical’ or able social media. The project will be divided into three phases ‘clinical’ outcomes [16, 17]. The impact of bespoke web-based resources created directly in response to identified, unmet (Figure 1). Downloaded from https://academic.oup.com/ckj/article-abstract/11/4/474/4654835 by Ed 'DeepDyve' Gillespie user on 07 August 2018 476 | M.P.M. Graham-Brown et al. additionally will have patient blogging and message board Phase 1: Understanding the information needs of people capabilities. with IgAN This phase will focus on understanding the information needs The two-way nature of social media means that the resour- of patients with IgAN. Social media data will be or has been col- ces we create can be distributed back to patients through the same social media channels. The speed with which information lected in the following ways: can be disseminated, the potential reach and the low-cost of (i) Data scraping and analysis from Facebook groups. We have utilizing social media channels make them attractive platforms been granted permission to access and anonymously to properly engage and work with patients. scrape data from two closed IgAN patient support groups Whilst we anticipate creating many of the materials our- on Facebook by the group gatekeepers. These groups have selves, we anticipate that during our Phase 1 analysis we will a combined membership of over 9000 patients and focus discover certain web-based patient resources that are already on offering peer–peer support for people with IgAN. Posts being shared and used by patients. These will be reviewed by will be manually screened for content and anonymized the multidisciplinary team during the initial planning meeting before analysis. in Phase 2 and if appropriate, high-quality, reputable patient- (ii) Interrogation of publicly available data from Twitter and focused resources already exist that answer an information gap Instagram. Over the last 20 months we have been working that we identify, we will sign-post patients to these, and co- with the healthcare technology company DataTellsLife . host the information on the websites if possible, rather than V R Using predefined search terms and DataTellsLife search- duplicating the information. By taking this approach, we hope ing algorithms, we have identified over 3500 discrete social to reduce ‘silo-working’ and draw together like-minded groups media posts from patients with IgAN on Twitter and working for patients with IgAN in a collaborative way, develop- Instagram. Anonymized posts will be manually screened ing a more inclusive IgAN social network. This will include pro- for content before analysis. moting national research initiatives, such as RenalRadar, and patient support organizations such as the Kidney Care UK and Social media data will be analysed using a framework the- the National Kidney Federation. matic analysis approach. This will expose, describe and map It is crucial to the success of this project that resources are conceptual findings from social media posts [18]. The frame- created in partnership with all stakeholders. These will include work analysis will be informed by a patient involvement exer- patients, clinicians, nursing staff, academic staff, physiothera- cise that will take place prior to study commencement pists, occupational therapists and dieticians. We will hold two (Appendix 1). Framework analysis provides a systematic further focus group meetings with these multidisciplinary team approach to organize findings based on key themes and issues members to review, critique and edit the resources we create [19] and is acknowledged to be a suitable analysis technique for before they are published. cross-sectional, descriptive data. It will enable us to highlight It is also important that we coordinate a social media different aspects of the phenomena examined [20] and to draw response to support the dissemination of these resources. To meaningful themes from collected data whilst maintaining adequately respond to patients through social media channels, accuracy on behalf of patient views [21]. we will need to develop an active presence on social networking The extensive qualitative data source will be managed using sites. These will include Twitter, Facebook, Instagram, YouTube specific software (Tableau, standard package 2017, London, UK) and Google Communities. For each of these we will use the and bespoke digital tools developed at the University of Salford. V R hashtag #IgAPatient to tag each message we send and encour- The DataTellsLife real-time social media data organizing and age all who engage with the groups to do the same to gain an analysis platform will support Twitter and Instagram data man- idea of the impact of our messages and reach and to develop a agement and analysis. social marketing campaign. Setting up social media profiles is straightforward; however, engaging in the community will take Phase 2: Development of website, resources and social time. This will be a key part of the process, however, as infor- media channels mation shared contributes to sustained engagement [9]. The second phase of the project will focus on the development of resources to address information gaps identified during Phase 3: Assessing impact Phase 1. An investigator and collaborator meeting involving We will undertake an evaluation to assess the impact of the patients, clinicians, nurses, academic staff, dieticians, physio- resources developed on patient experience and learning. This therapists and occupational therapists will be convened to dis- will be achieved through website usage analytics and through cuss the findings of the Phase 1 analysis. In conjunction with analysis of the online interaction with the resources we create, these individuals, a plan will be agreed for how best to produce either through feedback from the websites or from interaction resources to respond to the unmet needs of patients with IgAN. with social media posts. A range of multimedia information will be created, including podcasts, videos, infographics and written materials. This infor- General online activity, use and evaluation. Web analytics will be mation will be co-hosted on two purpose-built websites: used to analyse performance and visitors’ interaction with the V R (i) A dedicated interactive ‘MediSoci ’ platform constructed in site. Google Analytics will be used to undertake analysis of the R R V V partnership with ‘DataTellsLife ’. The MediSoci platform traditional Wordpress website as previously described [22]. The is a novel, hybrid, social media platform that integrates the MediSoci platform that will be developed in conjunction with functionality of a hosting website with the ever-changing DataTellsLife has in-built, real-time usage analytics that we V R conversations that occur through social media. will use to assess interaction with the MediSoci platform. We (ii) A traditional, multifunction Wordpress website designed in will also undertake a further social media analysis using the collaboration with patients, which will host materials, but hashtracking service Symplur to assess the performance of the Downloaded from https://academic.oup.com/ckj/article-abstract/11/4/474/4654835 by Ed 'DeepDyve' Gillespie user on 07 August 2018 Using social media to identify unmet patient need | 477 hashtag #IgAPatient and for further qualitative analysis of social mainstream platforms have been chosen (Twitter, Instagram and Facebook). media posts that have used the #IgAPatient hashtag. Observation of interaction with social media posts. Throughout the Discussion study period the research team will observe patient engage- ment with resources, reported knowledge gaps and patient Patients with chronic diseases are increasingly using social net- working channels to connect with others and to search for experiences to offer a deeper understanding and explanation of information to help them understand their condition. This proj- the role of social media in satisfying patients information need ect is a 21st century digital solution to understanding patient and maximizing engagement with resources. Collection and need and developing resources in partnership with patients and qualitative analysis of this data will offer more granular detail about the patient experience and complement the data representatives of the multidisciplinary team. Whilst this study will be looking at patients with IgAN, we envisage that the find- obtained about general online activity and website, and ings will influence the design of similar studies for other resource usage. conditions. This project is truly patient-centred as we are reaching out Ethical considerations through freely accessible social networking channels to patients This project received ethical approval from the University of and looking at the questions they are asking and the discus- Salford. A number of publications that focused on the ethical sions they are having. This method differs from the traditional issues associated with big data and data mining from social model as social media channels exist outside and independent media were consulted to inform the safety and ethics of this of traditional clinical environments. Moreover, not only will we study [23, 24]. be reaching out to patients to discover the questions they would like answers to, but we will be responding through the same Zero patient–clinician interaction. We anticipate being asked medi- channels directly to them. If the model is shown to be success- cal and healthcare-related questions. Whilst it is imperative ful it can be used as the paradigm for modern/electronic, that we interact and engage with patients through social media two-way communication between patients, clinicians and channels to build a network, we will not offer any specific or researchers. The success of this project would lead to direct personal medical/other advice through these channels. Patients benefits for patients and contribute to our understanding of the seeking specific advice will be advised to contact local health- personal needs of individuals. care teams for any health or information concerns. It will be clear on all social media profiles we create and the websites we Authors’ contributions build that specific medical information or second opinions will not be given. T.O. is an NIHR Clinical Lecturer. M.P.M.G.-B. is a doctoral research fellow at the national centre for sport and exercise Zero privacy. All social media posts from Twitter and Instagram medicine, Loughborough University. J.B. has a research agree- V R V R in conjunction with DataTellsLife are publicly posted, but will ment with L.Y.J.C. (CEO of DataTellsLife ) to analyse social still be anonymized before analysis. Where it is freely available, media data with their technology, with additional support to information about the demographics and locations of users launch an educational program for patients with IgAN on their who have posted have been collected if these are linked to the MediSoci platform. post in the public domain, but they have not been sought when not made available by the individual users. Funding Data ‘scraped’ from Facebook will be anonymized before analysis. The gatekeepers of both Facebook groups have agreed This study is an independent research funded by a Kidney that members of the research team can join the groups and Research UK John Feehally Stoneygate Research Award interact with patients to evaluate the impact of the resources (grant number: JFS_IN_006_20160916). we create. These interactions and the data acquired will be anonymous. Conflict of interest statement Importantly, no identifiers such us e-mail, usernames, IP addresses, pseudonyms, localization of networks or direct quo- None declared. tations that may be attributable via search engines will be included in any material made available to public. References Zero consent . Individual consent is not required for the analysis 1. Atkinson RD, Castro D. Digital Quality of Life: Understanding the of social media posts as we are only undertaking analysis of Personal and Social Benefits of the Information Technology material available in the public domain, or to which we have Revolution 2008; https://papers.ssrn.com/sol3/papers.cfm? been granted specific access. Access to Facebook data is as abstract_id=1278185 (18 October 2017, date last accessed) agreed with the gatekeepers of these groups, and an agreed pro- 2. Van De Belt TH, Engelen LJ, Berben SA et al. Definition of tocol that indicates how this data will be used will be signed Health 2.0 and Medicine 2.0: a systematic review. J Med with and by the gatekeepers of the closed Facebook groups. Internet Res 2010; 12: e18 3. Hawn C. Take two aspirin and tweet me in the morning: how Zero representativeness of findings. The representativeness of find- Twitter, Facebook, and other social media are reshaping ings is a widespread issue around big data due to the fact that health care. Health Aff 2009; 28: 361–368 each platform is used by only a segment of the population. In 4. Bender JL, Jimenez-Marroquin MC, Ferris LE et al. Online order to capture the experiences of a diverse user segment, the communities for breast cancer survivors: a review and Downloaded from https://academic.oup.com/ckj/article-abstract/11/4/474/4654835 by Ed 'DeepDyve' Gillespie user on 07 August 2018 478 | M.P.M. Graham-Brown et al. online communities connecting patients and health profes- analysis of their characteristics and levels of use. Supp Care Cancer 2013; 21: 1253–1263 sionals. Patient Educ Couns 2014; 95: 265–270 5. Zhang S, O’Carroll Bantum E, Owen J et al. Online cancer 15. Griffiths F, Cave J, Boardman F et al. Social networks—the communities as informatics intervention for social support: future for health care delivery. Soc Sci Med 2012; 75: 2233–2241 conceptualization, characterization, and impact. J Am Med 16. Garg S, Garg D, Turin TC et al. Web-based interventions for Inform Assoc 2017; 24: 451–459 chronic back pain: a systematic review. J Med Internet Res 6. Duggan M, Brenner J. The Demographics of Social Media Users, 2016; 18: e139 2012. Washington, DC: Pew Research Center’s Internet & 17. Kuijpers W, Groen WG, Aaronson NK et al. A systematic American Life Project, 2013 review of web-based interventions for patient empower- 7. Scanfeld D, Scanfeld V, Larson EL. Dissemination of health ment and physical activity in chronic diseases: relevance for information through social networks: Twitter and antibiot- cancer survivors. J Med Internet Res 2013; 15: e37 ics. Am J Infect Control 2010; 38: 182–188 18. Miles MB, Huberman AM, Saldana J. Qualitative Data Analysis. 8. Guidry JP, Jin Y, Orr CA et al. Ebola on Instagram and Twitter: California: Sage, 2013 how health organizations address the health crisis in their 19. Tesch R. Qualitative Research: Analysis Types and Software. social media engagement. Public Relat Rev 2017; 43: 477–486 London, UK: Routledge, 2013 9. Vasilica CM. Impact of using social media to increase patient 20. Ritchie J, Lewis J, Nicholls CM et al. Qualitative Research information provision, networking and communication. Practice: A Guide For Social Science Students and Researchers. The Institution name is the School of Nursing and California: Sage, 2013 Midwifery, University of Salford. Thesis. 2015 21. Braun V, Clarke V. Using thematic analysis in psychology. 10. Pemmaraju N, Utengen A, Gupta V et al. Social media and Qual Res Psychol 2006; 3: 77–101 myeloproliferative neoplasms (MPN): analysis of advanced 22. Light B, Ormandy P. Digital and Social Media: Impacts and metrics from the first year of a new Twitter community: # Potentials for Cervical Screening Awareness. University of MPNSM. Curr Hematol Malig Rep 2016; 11: 456–461 Salford, 2013; http://usir.salford.ac.uk/30646/ (18 October 11. Department of Health. The Mandate: A Mandate from the 2017, date last accessed) Government to the NHS Commissioning Board: April 2013 to 23. Markham A, Buchanan E. Ethical Decision-Making and Internet March 2015. London: Department of Health, 2012 Research: Recommendations from the Aoir Ethics Working 12. Hartzler A, Pratt W. Managing the personal side of health: Committee, Version 2.0. http://aoir.org/reports/ethics2.pdf. how patient expertise differs from the expertise of clini- 2012 (17 October 2017, date last accessed) cians. J Med Internet Res 2011; 13: e62 24. Beninger K, Fry A, Jago N et al. Research using social media; 13. Schneider A, Von Krogh G, Ja ¨ Ger P. ‘What’s coming next?’ users’ views. NatCen Social Research 2014: 1–40; http://www. Epistemic curiosity and lurking behavior in online commun- natcen.ac.uk/media/282288/p0639-research-using-social- ities. Comput Hum Behav 2013; 29: 293–303 media-report-final-190214.pdf (18 October 2017, date last 14. Vennik FD, Adams SA, Faber MJ et al. Expert and experiential knowledge in the same place: Patients’ experiences with accessed) Downloaded from https://academic.oup.com/ckj/article-abstract/11/4/474/4654835 by Ed 'DeepDyve' Gillespie user on 07 August 2018 http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Clinical Kidney Journal Oxford University Press

Study protocol: responding to the needs of patients with IgA nephropathy, a social media approach

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© The Author 2017. Published by Oxford University Press on behalf of ERA-EDTA.
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Abstract

Background: IgA nephropathy is the most common cause of glomerulonephritis in the Western world and predominantly affects young adults. Demographically these patients are the biggest users of social media. With increasing numbers of patients turning to social media to seek information and support in dealing with their disease, analysis of social media streams is an attractive modern strategy for understanding and responding to unmet patient need. Methods: To identify unmet patient need in this population, a framework analysis will be undertaken of prospectively acquired social media posts from patients with IgA nephropathy, acquired from a range of different social media platforms. In collaboration with patients and members of the clinical multidisciplinary team, resources will be created to bridge gaps in patient knowledge and education identified through social media analysis and returned to patients via social media channels and bespoke websites. Analysis of the impact of these resources will be undertaken with further social media analysis, surveys and focus groups. Conclusions: Patients with chronic diseases are increasingly using social networking channels to connect with others with similar diseases and to search for information to help them understand their condition. This project is a 21st century digital solution to understanding patient need and developing resources in partnership with patients, and has wide applicability as a future model for understanding patient needs in a variety of conditions. Key words: IgA nephropathy, patient need, social media Received: August 29, 2017. Editorial decision: October 4, 2017 V C The Author 2017. Published by Oxford University Press on behalf of ERA-EDTA. This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/ licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited. For commercial re-use, please contact journals.permissions@oup.com Downloaded from https://academic.oup.com/ckj/article-abstract/11/4/474/4654835 by Ed 'DeepDyve' Gillespie user on 07 August 2018 Using social media to identify unmet patient need | 475 Introduction Inial invesgator-led paent collaborator focus group Pre-study meeng to inform themac framework analysis planning We are living in a digital age. The growth of the Internet and the advent of social media has revolutionized healthcare by provid- ing new communication channels, allowing patients access to Themac analysis of Themac analysis of Phase 1 support and health-related information [1, 2]. It has changed Facebook data Twier & Instagram data the way patients are able to search and exchange health-related information in new and diverse ways [3]. Online health com- Paent & MDT collaborator meeng to review analysis munities existed before social media as message boards, discus- of phase 1 & plan resources to be development sion forums, websites and interactive blogs that were ‘governed’ by individuals, traditionally termed ‘webmasters’ [4]. Development of websites and resources in response Large-scale, public, social networking sites deviate from this to the analysis undertaken in phase one model as interactions occur between users, rather than Phase 2 through/via a ‘webmaster’. These sites attract more patients Paent and MDT collaborator meeng to review and and produce vast amounts of peer-to-peer interactions, with refine resources before publicaon on websites and unprecedented potential to extract novel information to study distribuon through social media channels content at scale [5]. ‘Social media’ is a term that refers to content that is driven Publicaon of resources on websites and distribuon through social media channels by users and shared on social networking platforms. The ‘media’ may exist in different forms across a wide range of plat- Assessment of impact of resources, through website forms. Different social network sites exist to support the shar- usage stascs, analysis of interacon with social Phase 3 ing of different kinds of media, for example, blogging (e.g. media posts and across social media plaorms Medium), microblogging (e.g. Twitter), video sharing (e.g. Fig. 1. Study protocol timeline. MDT, multidisciplinary team. YouTube), photos or pictures (e.g. Instagram), or online com- munities, which host most kinds of media (e.g. Facebook or Google Communities). These sites facilitate interactions patient need on quality of life, satisfaction and experience between individuals, with users able to choose whether their has not been well studied. accounts and posts remain private or public. Studies suggest IgA nephropathy (IgAN) is a rare disease, but is the most that 70% of Internet users use at least one form of social media common cause of glomerulonephritis in the UK and the [6], and each social media platform may play a unique and dif- Western world. IgAN tends to affect younger patients, who are fering role in engaging patients [7–9]. The volume, diversity and more likely to be active on social media than older patients. The interrelated nature of information that passes through social nature of the questions patients pose, related to IgAN, are not media channels make them rich data resources and medical known and the possibility of systematically analysing freely professionals are already starting to explore the nature of available social media posts to organically understand unmet patient interactions on these sites [10]. patient needs is an attractive prospect. There are currently no specific treatments shown to be effective for all patients with Social media, an outlet to exchange information IgAN and patients lack access to information to manage their The numbers of patients with long-term health conditions is condition. This project was developed from preliminary work increasing. Over 15 million people have a long-term health con- which identified that large numbers of younger patients with dition in the UK and the Department of Health has identified IgAN use social networking sites to try to find information about the need to provide better access to information for patients their condition, to search for fellow patients and resources, and and improve communication with patients using technology to look for clinical trials they may be able to join. [11]. Traditionally, patients with chronic illness obtain informa- The objectives of this project are: tion relating to their condition from healthcare providers, who (i) To identify the unmet needs of patients with IgAN through often focus on the clinical impact of disease and may ignore the analysing data from social media platforms (Twitter, effects on daily life or emotional well-being [12]. The rise of Instagram and Facebook). social media has allowed patients to exchange health-related (ii) To develop resources to meet the information needs of information [1, 2], which satisfies their information needs [9]. patients and disseminate these to patients through social Patients may seek information for any number of reasons, media channels and website hosting. including to: prepare for or decide upon treatment; manage (iii) To assess the effectiveness of resources developed in symptoms; understand potential adverse effects; reduce uncer- meeting the information gaps for people with IgAN. tainty; and fill knowledge gaps [13–15]. In addition, patients (iv) To explore and understand how social media can be used draw from enactive mastery experience (positive feedback as a as a communication tool to improve patient experience, result of posting), vicarious experience (other patients stories) understanding of disease, networking and peer support. and social persuasion (positive feedback, conversations), which contributes to an increase in self-efficacy [9]. Web- based resources and responsive interventions have had little Materials and methods clinical impact on outcomes for patients. Indeed studies This research study is a qualitative data mining exercise to in chronic back pain and in cancer survivors show that web- identify and respond to information gaps using publicly avail- based interventions have variable impact on ‘medical’ or able social media. The project will be divided into three phases ‘clinical’ outcomes [16, 17]. The impact of bespoke web-based resources created directly in response to identified, unmet (Figure 1). Downloaded from https://academic.oup.com/ckj/article-abstract/11/4/474/4654835 by Ed 'DeepDyve' Gillespie user on 07 August 2018 476 | M.P.M. Graham-Brown et al. additionally will have patient blogging and message board Phase 1: Understanding the information needs of people capabilities. with IgAN This phase will focus on understanding the information needs The two-way nature of social media means that the resour- of patients with IgAN. Social media data will be or has been col- ces we create can be distributed back to patients through the same social media channels. The speed with which information lected in the following ways: can be disseminated, the potential reach and the low-cost of (i) Data scraping and analysis from Facebook groups. We have utilizing social media channels make them attractive platforms been granted permission to access and anonymously to properly engage and work with patients. scrape data from two closed IgAN patient support groups Whilst we anticipate creating many of the materials our- on Facebook by the group gatekeepers. These groups have selves, we anticipate that during our Phase 1 analysis we will a combined membership of over 9000 patients and focus discover certain web-based patient resources that are already on offering peer–peer support for people with IgAN. Posts being shared and used by patients. These will be reviewed by will be manually screened for content and anonymized the multidisciplinary team during the initial planning meeting before analysis. in Phase 2 and if appropriate, high-quality, reputable patient- (ii) Interrogation of publicly available data from Twitter and focused resources already exist that answer an information gap Instagram. Over the last 20 months we have been working that we identify, we will sign-post patients to these, and co- with the healthcare technology company DataTellsLife . host the information on the websites if possible, rather than V R Using predefined search terms and DataTellsLife search- duplicating the information. By taking this approach, we hope ing algorithms, we have identified over 3500 discrete social to reduce ‘silo-working’ and draw together like-minded groups media posts from patients with IgAN on Twitter and working for patients with IgAN in a collaborative way, develop- Instagram. Anonymized posts will be manually screened ing a more inclusive IgAN social network. This will include pro- for content before analysis. moting national research initiatives, such as RenalRadar, and patient support organizations such as the Kidney Care UK and Social media data will be analysed using a framework the- the National Kidney Federation. matic analysis approach. This will expose, describe and map It is crucial to the success of this project that resources are conceptual findings from social media posts [18]. The frame- created in partnership with all stakeholders. These will include work analysis will be informed by a patient involvement exer- patients, clinicians, nursing staff, academic staff, physiothera- cise that will take place prior to study commencement pists, occupational therapists and dieticians. We will hold two (Appendix 1). Framework analysis provides a systematic further focus group meetings with these multidisciplinary team approach to organize findings based on key themes and issues members to review, critique and edit the resources we create [19] and is acknowledged to be a suitable analysis technique for before they are published. cross-sectional, descriptive data. It will enable us to highlight It is also important that we coordinate a social media different aspects of the phenomena examined [20] and to draw response to support the dissemination of these resources. To meaningful themes from collected data whilst maintaining adequately respond to patients through social media channels, accuracy on behalf of patient views [21]. we will need to develop an active presence on social networking The extensive qualitative data source will be managed using sites. These will include Twitter, Facebook, Instagram, YouTube specific software (Tableau, standard package 2017, London, UK) and Google Communities. For each of these we will use the and bespoke digital tools developed at the University of Salford. V R hashtag #IgAPatient to tag each message we send and encour- The DataTellsLife real-time social media data organizing and age all who engage with the groups to do the same to gain an analysis platform will support Twitter and Instagram data man- idea of the impact of our messages and reach and to develop a agement and analysis. social marketing campaign. Setting up social media profiles is straightforward; however, engaging in the community will take Phase 2: Development of website, resources and social time. This will be a key part of the process, however, as infor- media channels mation shared contributes to sustained engagement [9]. The second phase of the project will focus on the development of resources to address information gaps identified during Phase 3: Assessing impact Phase 1. An investigator and collaborator meeting involving We will undertake an evaluation to assess the impact of the patients, clinicians, nurses, academic staff, dieticians, physio- resources developed on patient experience and learning. This therapists and occupational therapists will be convened to dis- will be achieved through website usage analytics and through cuss the findings of the Phase 1 analysis. In conjunction with analysis of the online interaction with the resources we create, these individuals, a plan will be agreed for how best to produce either through feedback from the websites or from interaction resources to respond to the unmet needs of patients with IgAN. with social media posts. A range of multimedia information will be created, including podcasts, videos, infographics and written materials. This infor- General online activity, use and evaluation. Web analytics will be mation will be co-hosted on two purpose-built websites: used to analyse performance and visitors’ interaction with the V R (i) A dedicated interactive ‘MediSoci ’ platform constructed in site. Google Analytics will be used to undertake analysis of the R R V V partnership with ‘DataTellsLife ’. The MediSoci platform traditional Wordpress website as previously described [22]. The is a novel, hybrid, social media platform that integrates the MediSoci platform that will be developed in conjunction with functionality of a hosting website with the ever-changing DataTellsLife has in-built, real-time usage analytics that we V R conversations that occur through social media. will use to assess interaction with the MediSoci platform. We (ii) A traditional, multifunction Wordpress website designed in will also undertake a further social media analysis using the collaboration with patients, which will host materials, but hashtracking service Symplur to assess the performance of the Downloaded from https://academic.oup.com/ckj/article-abstract/11/4/474/4654835 by Ed 'DeepDyve' Gillespie user on 07 August 2018 Using social media to identify unmet patient need | 477 hashtag #IgAPatient and for further qualitative analysis of social mainstream platforms have been chosen (Twitter, Instagram and Facebook). media posts that have used the #IgAPatient hashtag. Observation of interaction with social media posts. Throughout the Discussion study period the research team will observe patient engage- ment with resources, reported knowledge gaps and patient Patients with chronic diseases are increasingly using social net- working channels to connect with others and to search for experiences to offer a deeper understanding and explanation of information to help them understand their condition. This proj- the role of social media in satisfying patients information need ect is a 21st century digital solution to understanding patient and maximizing engagement with resources. Collection and need and developing resources in partnership with patients and qualitative analysis of this data will offer more granular detail about the patient experience and complement the data representatives of the multidisciplinary team. Whilst this study will be looking at patients with IgAN, we envisage that the find- obtained about general online activity and website, and ings will influence the design of similar studies for other resource usage. conditions. This project is truly patient-centred as we are reaching out Ethical considerations through freely accessible social networking channels to patients This project received ethical approval from the University of and looking at the questions they are asking and the discus- Salford. A number of publications that focused on the ethical sions they are having. This method differs from the traditional issues associated with big data and data mining from social model as social media channels exist outside and independent media were consulted to inform the safety and ethics of this of traditional clinical environments. Moreover, not only will we study [23, 24]. be reaching out to patients to discover the questions they would like answers to, but we will be responding through the same Zero patient–clinician interaction. We anticipate being asked medi- channels directly to them. If the model is shown to be success- cal and healthcare-related questions. Whilst it is imperative ful it can be used as the paradigm for modern/electronic, that we interact and engage with patients through social media two-way communication between patients, clinicians and channels to build a network, we will not offer any specific or researchers. The success of this project would lead to direct personal medical/other advice through these channels. Patients benefits for patients and contribute to our understanding of the seeking specific advice will be advised to contact local health- personal needs of individuals. care teams for any health or information concerns. It will be clear on all social media profiles we create and the websites we Authors’ contributions build that specific medical information or second opinions will not be given. T.O. is an NIHR Clinical Lecturer. M.P.M.G.-B. is a doctoral research fellow at the national centre for sport and exercise Zero privacy. All social media posts from Twitter and Instagram medicine, Loughborough University. J.B. has a research agree- V R V R in conjunction with DataTellsLife are publicly posted, but will ment with L.Y.J.C. (CEO of DataTellsLife ) to analyse social still be anonymized before analysis. Where it is freely available, media data with their technology, with additional support to information about the demographics and locations of users launch an educational program for patients with IgAN on their who have posted have been collected if these are linked to the MediSoci platform. post in the public domain, but they have not been sought when not made available by the individual users. Funding Data ‘scraped’ from Facebook will be anonymized before analysis. The gatekeepers of both Facebook groups have agreed This study is an independent research funded by a Kidney that members of the research team can join the groups and Research UK John Feehally Stoneygate Research Award interact with patients to evaluate the impact of the resources (grant number: JFS_IN_006_20160916). we create. These interactions and the data acquired will be anonymous. Conflict of interest statement Importantly, no identifiers such us e-mail, usernames, IP addresses, pseudonyms, localization of networks or direct quo- None declared. tations that may be attributable via search engines will be included in any material made available to public. References Zero consent . Individual consent is not required for the analysis 1. Atkinson RD, Castro D. 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Clinical Kidney JournalOxford University Press

Published: Aug 1, 2018

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