Journal of Clinical & Biomedical Research

Introduction
The proliferation of cheap and easy access to information and communication technology (ICT) over the past twenty years has created opportunities for research data to be collected via several media unavailable to previous generations of researchers [1]. The move to collect quantitative data using the World Wide Web was a relatively small step building on already established data entry systems. However, the use of on-line methods to collect qualitative data required a more significant shift in mind set to take advantage of the benefits offered.

Research data may be collected to highlight or outline a specific issue, or to substantiate and validate past and present research across age groups and diverse backgrounds. When using qualitative methods the researcher is the instrument and thus requires specific skills. Qualitative research often uses open-ended data collection methods e.g. direct observation of participants is common in experimental and qualitative research. There has been a growing interest in qualitative research methods in health and social care, often associated with Allied Health Professional (AHP) research. However, the emphasis on Evidence Based Medicine (EBM) accompanied by recognition of the importance of quality of life has prompted health care professionals of all disciplines to acknowledge the value of qualitative methods [2-5].

EBM requires the integration of individual clinical expertise with the best available external clinical evidence from research combining evidence from qualitative and quantitative research creates an opportunity for improving the way care is provided. The findings of qualitative research can complement quantitative studies offering insights and explanations relating to individual (or cohort) experiences, attitudes and beliefs in order to inform and develop better health care strategies Table 1 summarizes some of the key differences between qualitative and quantitative data collection approaches [6-9].

Chronic Kidney Disease (CKD)
Chronic Kidney Disease (CKD) is regarded as a public health problem globally. This Long-Term Condition (LTC) affects 10 ? 16% of the general adult population in fast and slow developing countries. 5% of UK population suffer from stages CKD 3-to- 5. The characterization of CKD at all stages is an important part of its management and allows the initiation of appropriate treatments with the aim of slow progression of kidney disease. CKD in children and adults is characterized by kidney damage or a decrease in glomerular filtration rate (or GFR) [10-15].

Providing up-to-date, accurate health information is pinnacle for patients to take ownership. The most recent definition for CKD describes kidney damage, a glomerular filtration rate of less than 60 mL/min per 1.73m2 for 3 months or more recommended by Kidney Disease Quality Outcome Initiative (K/DOQI) [16].

In a U.S pilot investigation focusing on pre-dialysis education, several modalities of engagement and dissemination for education were evaluated . This included face to face education and online sessions and the endpoint was patient?s ability to select Renal Replacement Therapy (RRT) modality right for them. Three assessment tools were utilized to compare groups: including CKD knowledge, literacy, and quality of life. Education sessions were auctioned over five hours, and over three sessions. The study was undertaken over a three-year duration, wherein 240 consented to take part. It was recognised that education is required to support CKD patients have a smarter understanding of disease and treatment options. Patients wished they had been educated earlier irrespective of face to face or online modality [17].

Aims and Objectives
The changes in technology and the way care is delivered to patients will change the nature of roles for Allied Healthcare Professionals (AHPs) across CKD care. For example, Healthcare Scientists could have more educational and advice focused roles and supporting interpretation of test results where traditionally they are behind scenes? in healthcare delivery. Technology also prompts change in relationship between areas of kidney care and healthcare professional involvement across health sectors [18-19].

the aims and objectives of this UK study include the following 1) To understand which topics and subjects are pertinent to CKD patients; 2) To understand whether, retrospectively there has been an educational neglect as part of healthcare delivery; and 3) To understand how healthcare and education for CKD patients could be more integrated. The aims will be achieved through topic tagging and identify threads and discussions close to two decades (16-years) between two peer support groups.

Methodology
The research team created a topic tagging activity wherein topics between two social media platforms, The Renal Patient Support Group (RPSG) and Kidney Disease and Renal Support (KDARs) for Kids having understood aims and remit of support groups. Tags were created against fourteen (14) different topics having extensively investigated over 1-month (March and April 2020) most popular key terms. Topics were tagged for 2-weeks per social media platform (i.e. 2-weeks RPSG, online adult renal population) and 2-weeks through KDARs, (online paediatric and young kidney population).

Topic tagging retrospectively will help understanding of what areas of healthcare are popular, and where patients between the two groups would find health professional involvement further supportive. Thematic Analysis was used to highlight findings, according to over-arching themes having used NVIVO-12 software to code and help understand where there are healthcare educational inefficiencies and identify what information needs still need to be met in the care for both paediatric and adult CKD patients.

Patient and Public Involvement (PPI)
More research is now highlighting how PPI is important to help understand gaps across healthcare. To this end, several authors have informed that to understand how best practice should be implemented. In this light, it is crucial that research has PPI work stream or ?taskforce?, to help focus research and bring wider transparency. Additionally, it is imperative that any research methodology implemented is streamlined and based on potential participant group?s ability and capacity to get involved and contribute. This is also where it has been highlighted, that if researcher chooses online methodology to collect data, maintaining confidentiality is an overall deciding factor for participants who would otherwise not get involved. Whilst there is growing literature, Frameworks and Guidelines are yet to be published surrounding PPI in healthcare research [20-25].

The involvement of patients in decision about healthcare, planning and service provision has been introduced in several countries, including the UK, Canada, Holland, and Australia [26]. The public involvement and support are needed to promote innovation and research; the research needs to reflect public interest and values. PPI is a key element in social and healthcare research in the United Kingdom [21, 25]. Patients should be a key part of the solution to establish beneficial health research.

PPI Workshop Implementation
PPI is an important mechanism; involving patients and carers in this work has led streamline focus and research rigour. NIHR INVOLVE best practice guidelines were followed prior PPI implementation (NIHR 2020). This research was co-developed between patients and researchers between two social media platforms wherein founders and administrators were able to highlight gaps surrounding aims and objectives through to study implementation. As part of this work, 13 team members (7xRPSG and 6xKDARs) attended two high street community workshops, Bristol in May and June 2019. Prior topic tagging activity, founders of both paediatric and adult renal social media platforms highlighted an understanding of how members use groups for sharing of experiences and understanding surrounding CKD. The evaluation and feedback helped the research team understand patients view surrounding access to healthcare education and information to focus this study. Feedback and context can be identified in Tables 5 and 6, supplement 3.

Topic Tagging - Development and Implementation
Topic tags were then co-created wherein, a research intern worked with founders to understand what areas of kidney health and care is popular using search facility via Facebook in these closed support groups. The team organised a co-production meeting wherein it was discussed and decided that given that that both groups have international membership and global reach, it would be important to ensure that topics and tags applied to general renal population, and not specific to paediatrics or adult population. This would help gain maximum number of tagged topics between two groups. This work aimed to tag as many topics according to designated topics (or themes) over 1-month duration between two groups. Table 2 provides main topics that were identified and tagged, respectively.

Ethics
All members between two groups were informed to refer to group disclaimers and that topics would be tagged. Administration teams between paediatric and adult kidney social media platforms ?pinned? an announcement at the top of respected groups, so that members would know 1) topics will be tagged to help identify experiences relating to themes and subject entities and 2) to highlight how tagging activity is being conducted to identify discussions relevant to health focuses and scenarios, more swiftly and 3) overall highlight how two kidney care platforms help searching out information to on-going aspects surrounding care and support. As part of this activity, members between both groups were informed topic tagging and confidentiality will remain in group. Group disclaimers also prompted informed consent. Consideration for the need for ethics approval was made and the Department of Health guidance was consulted (Governance arrangements for research ethics committees 2012). Ethics committee approval was not required for this work; however, guidelines of General Data Protection Regulation (2018) were followed (refer below).

General Data Protection Regulation (GDPR) (2018)
Primarily the RPSG and KDARs are both closed Facebook support groups and both platforms are for patients and carers in CKD. RPSG and KDARs are covered under Facebook?s data privacy and protection policy. The General Data Protection Regulation (GDPR) creates consistent data protection rules across the EU. The GDPR has been in effect as of 25th May (2018) and applies to organisations based in the EU, as well as to companies around the world who provide or offer goods or services, and who process data from or about people in the EU. In keeping with GDPR, the research team have not reported any personal identifiable data (PID) (i.e. names, dates of birth, addresses and/ or locations) of participants. The GDPR and data protection guidelines were adhered to and applied throughout, respectively.

Results
The RPSG has over 8000 adult CKD patients and KDARs has over 1500 paediatrics and young patients (refer supplements 1 and 2). Between the two international groups, 2,560 threads tagged against 14 topics. Results here inform that patients between both adult and paediatric cohorts still require additional support across several areas of kidney care, and this retrospective trend analysis provides snapshot qualitative data of topics and context in relating to evidence-base from two renal online cohorts over 16-years. Topic Tags and Qualitative Data (RPSG) ? Adult Population displayed in Table 3 and Topic Tags and Qualitative Data (KDARs) ? Paediatric/ Young population are displayed in Table 4. Four main themes were identified through this study including 1) Using Different Mediums to Collect Qualitative Data and Understanding Healthcare; 2) Reliability and Validity of using the Internet to Collect Data; 3) Healthcare, Patient and Public Involvement and Maintaining Confidentiality through Online Methods to collect Qualitative Data; 4) Advantages, Disadvantages and Limitations to Online Data Collection and Peer Support Groups and 5) Using Qualitative Methodology to Understand Educational Needs for CKD Patients. In addition, this study informs that social media groups between adult and paediatric cohorts discussions are not just ?clinically relevant? but also form pinnacle understanding of where the gaps in education have been for patients near two decades.

PPI Evaluation and Feedback from Workshops, May and June 2019

This workshop helped understand what additional educational support through online spaces and social media would help CKD Patients.

Supplement 1: The Renal Patient Support Group (RPSG)
Patients and carers often have various questions relating to kidney care following routine clinical outpatient appointments. Owing to lack of opportunities to share real-life experiences with fellow peers via face-to-face communication, the intention of the RPSG founders was to provide an online support group as part of kidney care received at the North Bristol NHS Trust in Bristol, South-West England UK. The RPSG was formally founded in (2009) to help raise CKD awareness on a wider scale, for the adult renal population and provides support from ages 18 plus. The group has grown exponentially and now has over 8700 members internationally. The RPSG has been a support group for ALL who live with this long-term condition. Patients and carers are using the RPSG all around the world because involvement and engagement activities through the social media platform provide a wider opportunity for discussions about how patients, professionals and researchers could be working in partnership to find answers and improve disease and lives of patients with this long-term condition. Being involved also provides potential to become an innovative model for shared decision- making. The RPSG membership has proved that those using the group now have an increasing understanding of CKD, care plans and related disease-processes. The RPSG is highly research active, building on evidence-base to better the care and lives of patients. Whilst the RPSG does not provide formal medical advice; it is a support group for patients, siblings, carers, guardians, and families to share real-life experiences and everyday challenges. Over 10 years, RPSG have an international administration and research team, and this helps keep group live and active, 7-days a week, 24 hours a day. The RPSG welcomes everyone to join.

Supplement 2: Kidney Disease and Renal Support (KDARs) for Kids
The Kidney Disease and Renal Support (or KDARs) for Kids is a group founded in Lincolnshire, North East UK, (2014) and was initiated for patients, parents, guardians and carers of babies, toddlers and young people who are living with CKD and renal disease. The social media platform supports paediatrics and young people from ages 0-18 years. KDARs was inspired by the founder?s own personal experiences when daughter suffered with AKI, secondary to antepartum haemorrhage during new-born period; the daughter of founder was later diagnosed with CKD stage 3B. The KDARs team offers ?online space? for families to communicate, share experiences and stories, offer supportive advice, especially when areas of health become challenging and where face to face communication is not always possible. The group has grown exponentially and now has over 1600 members internationally. Confidentiality is paramount in KDARs, and what is raised, shared, and discussed remains within the closed platform. Paediatrics and young people, families, siblings, parents, and guardians require a safe and secure place to share understanding without the anxiety of potentially feeling comprised elsewhere. The lack of support for paediatric renal patients and families is overwhelmingly obvious. The KDARs team is bridging a gap that requires more established educational and support pathways built into paediatrics and young people?s kidney care, especially in a minority renal health population. Safeguarding, confidentiality, and the security of KDARs members and families is extremely pertinent to objectives and mission of the group. Anyone who now wishes to join KDARs have a set of questions to answer before being accepted. The KDARs membership encompasses a strong administration team who have offered time to support and keep the platform running smoothly on a 24-hour basis. Over 6 years, KDARs have admin involved from UK and USA, and this helps keep the group live and active, 7-days a week, 24 hours a day.

Theme 1
Using Different Mediums to Collect Qualitative Data
The internet and online methodologies allow considerable scope for investigators to both collect data through online platforms but also understand gaps in patient care and education across a wide range of health conditions [28-40] . Understanding educational needs across health conditions and diverse populations is challenging [41-44]. Equally using different data collection modalities to understand gaps across health spheres is demanding.

One study involving year 7-and year 10 pupils (n=76) from diverse cultural and ethnic backgrounds attending four schools in two UK cities that used traditional paper and pencil and face to face focus groups to explore heart health associated beliefs. The authors highlight difficulty of recruiting participants from black and minority ethnic populations. The team inform that a small sampling frame limited stratification of the study in terms of gender, and randomized selection of participants. This study provides some insight into health beliefs and behaviours of African and African Caribbean groups, and authors believe that use of the World Wide Web potentially allows access and recruitment of larger number of participants, perhaps attracting younger people from diverse backgrounds to participate in qualitative research. One team implemented online methods to collect data to understand support networks used by African American breast cancer support patients [36, 37].

A U.S study involving culturally diverse populations focused on two specific areas of enquiry. 1) The Internet as a modality to collect data, and 2) Explore how the Internet can be used as an educational tool. Attention was drawn to the difficulty of including and representing the experiences of multicultural populations from low-income and working-class communities who are less likely to have access to the Internet, and when they do are likely to use it searching for information about jobs, housing, and entertainment. The team were able to identify that those who are more likely to use the Internet to retrieve educational insights and implement decisions are more likely to be educated and have higher income, and that black and minority ethnic populations, people with disabilities, and many elderly people are likely to be excluded from participating through online research [39].

Other factors that may impact in participation via Online include age differences in Internet usage and the limited availability or high cost of high-speed connection. Limited access often results in limited familiarity with internet technology. There can also be language-related communication difficulties particularly when involving individuals from diverse ethnic minority backgrounds; for example, the translation of terms like baseline data, empowerment, or LTC can be complex and may not necessarily carry the same meaning that are assigned in English [39].

A UK study implemented qualitative methodology to explore the meaning/ definition of what it means to have Myalgic Encephalomyelitis (ME), also known to as Chronic Fatigue Syndrome. The investigation used several of mediums to collect experiences of having ME. Interviews were conducted with 56 individuals, 49 members of internet support groups (38 chat line, 11 personal) and 7 members of two face-to-face support groups. Internet respondents were recruited through a message posted on a web-based support group. The purpose of the research was discussed with participants, they were assured that all data would be confidential, and were informed that they could withdraw from study at any time. Internet data were collected either as part of a non-synchronous (not ?real time?) web-based support group chat line, or via one-to-one e-mail. The authors conclude that there were practical advantages using the internet for research to collect data from individuals who suffer debilitating fatigue, amongst other health complexities. Moreover, by using computer- aided communication, access could be available to groups over a wide geographic area, some of whom may were housebound and otherwise were unable to participate [34].

An Australian team conducted a systematic search across several databases including Medline, CINAHL, Embase, Psych lit implementing keywords ?focus group?, ?cultural sensitivity?, ?transcultural nursing?, ?transcultural care?, ?cultural diversity? and ?ethnic groups? in early 2006. The teams aimed to understand online methodology and young people involvement. The review reported that bilingual healthcare workers and interpreters not only facilitate pragmatic elements of online involvement and methodologies for young people, but are also active to engage with community groups. The authors highlight that online focus groups may be one of the more advanced research tools available for obtaining data from young people and that focus groups are otherwise more appealing to people from culturally and linguistically diverse backgrounds [35].

Another U.S study investigates feasibility and comparability of findings from face-to-face versus online focus groups [41]. Twelve people with colon cancer took part in Face-to-Face or On-Line Focus groups focusing on issues of lifestyle (nutrition and exercise), cancer screening, and treatment. Throughout the study a project coordinator could be contacted by e-mail and telephone, to answer additional questions about protocol and confidentiality. Findings indicated that Internet-mediated (Instant Messaging) can be more accessible than traditional face-face focus groups for ill or LTC participants. Because Instant Messaging does not require face-to-face interactions, it also provides participants with anonymity, encouraging more comfort ability about disclosing sensitive information. The authors inform there are circumstances wherein such facilitation provides a feasible alternative to traditional face-to-face groups or one to one physical interviews [41].

Theme 2
Reliability and Authenticity of using Internet to Collect Data
Conducting research surrounding challenging questions is arduous, so how does one study a particular subgroup without compromising the validity of the data, especially when employing non-traditional sampling methods? [45]. both surveys and interviews can be highly structured, but it has become more common practice for interviews to become more open-ended, allowing participants to provide detailed answers. It is important that whatever data collection method; the design and purpose is reliable and valid for the population for which they will be used [46]. Concurrent with or following the iterative process, external validation, or transferability of the analysis is required. This may involve triangulation, i.e. involving two or more sources of information [9].

There is now a wide selection of mediums to create webpages and use the internet to collect data, involving interest groups and population. A webpage can contain formatted text, links to other websites, pictures, graphics, animations, and other media such as sounds or video. By using a variety of techniques, different internet users can be reached. However, there is no guarantee that any particular method of recruitment will yield a representative sample of a particular population [30, 47].

To ensure the reliability of qualitative research investigators are advised to adhere to the philosophy or analytic method used for data collection. The investigator needs to consider whether internet data collection allows a process to remain true to philosophy, as adopting a specific analytic method brings with it, differentiations between rigour and robustness. It is possible that authenticity and validity of online data collection is only as good as the team or investigator ensuring integrity of research question and methodology. Depending on the nature of a study web-based data collection can be advantageous, for example collecting data from international cohorts, exploring rare conditions, or sensitive issues. Larger online investigations tend to have greater power than traditional studies, however this may be offset by greater technical challenges (hardware, systems, and browsers) and demographic diversity in web respondents [48-51].

One Japanese study explores issues such as sampling, design, data collection and management, and the ethics of web-based research, collecting data relating to involuntary celibacy (Kanzaki, et al. 2004). The team retrospectively focused on advantages and disadvantages of using the Internet in sexuality studies and drew on research examples. The authors claimed that Internet broadens scope in comparison to research methods. However, the team also acknowledged further comparisons with data derived from previous studies was required to determine the reliability of current investigation [38].

A study conducted by a U.S team seeked to explore internet as a means of data collection for sexuality research. Benefits reported included larger, more representative recruitment and participation, however, risks to validity were identified such as lying and sabotage in the context of how ?having sex? is defined by gay, lesbian and bisexual college students. The investigation informed that the validation of online data collection should involve a comparison of internet and traditional techniques to examine sample biases. For example, data analysis of possible correlations between demographics of respondents and identify general trends after adjusting for differences [5].

There are many advantages of collecting data using an online sample. However, reliability and authenticity of using Internet requires structure. It is also important to bear in mind that using traditional methods also have weaknesses. For example, using traditional methods may not elicit sufficient information for sensitive or personal topics that may be considered deviant, such as drug use or sexual misconduct, as participants will not want to talk about sensitive topics ?openly? in either face to face interview settings or amongst strangers. Using either a traditional or online group approaches can generally be overcome by an experienced facilitator. Though online methods are reliable and authentic, more research using online methodologies are still required in the UK before it will be possible to conclude that internet-based data holds external validity [52-54]. Just over a decade on, in the UK online methods to collect mixed-method data are also becoming common-place and common practice in research.

Theme 3
Healthcare, Maintaining Confidentiality through Online
Methods to Collect Qualitative Data and PPI
Informed consent, privacy, and confidentiality are basic ethical tenets of any scientific research involving patients and/ or members of the public. When considering potential hazards to group participants or a community, privacy issues are especially quintessential. Much will depend on the nature of data to be collected, how it will be reported, how vulnerable the community, or sensitive the topic is, and the degree to which a researcher interacts with participants members [55-57].

The internet also holds various pitfalls for investigators, who can easily and unintentionally violate the privacy of individuals. Participants should therefore always be approached to give explicit consent to be quoted verbatim, and researchers are advised to contact participants in advance. Several studies highlight this focus in addition to ethical and confidentiality during research practices [29, 58, 41, 59, 33, 35].

One U.S team of investigators explored attitudes of teenagers and parents toward the use of a patient information portal. This investigation was conducted in two phases. In the first, the team conducted four focus groups: two with teenagers and two with parents. In the second, the team initiated two online bulletin boards, one for parents and one for teenagers. Initially letters were sent to parents inviting either the parent or the teenager to participate in the study. Where applicable, the teenager?s willingness to participate was established. Interested participants were contacted by a research assistant who explained the study and reviewed the informed consent. Participants were randomly assigned to either an electronic bulletin board group or an in-person focus group. Those in bulletin board group were asked to login at regular intervals and respond to questions and responses from other participants. Participants in the focus groups were asked to attend a two-hour meeting with five to eight other participants. Videotapes of the focus groups and transcripts from the bulletin board groups were independently analysed by team and the focus group/ bulletin board facilitator aimed identify themes and develop conclusions. Findings revealed that there was considerable support among teenagers and parents via patient portal and general issues relating confidentiality [60].

One UK team explores use of internet-based focus group approaches to be an effective way of engaging young adults with appearance-related concerns associated with having chronic skin conditions. The authors describe process of hosting and moderating synchronous online focus groups with the young people, highlighting some of the ethical, pragmatic, and retention challenges that researchers face using online methods. The team inform that the ethical issues might be no more hazardous than those associated with conventional methods, and suggest that many of the ethical questions posed by the rapidly developing virtual environment can be resolved by examining reactions to past research and by refining the definitions of concepts used in ethical discussions. Data was captured and stored on a faculty drive and only accessible by primary investigators and an IT technician supporting the project in the same way as data would be managed in a study using traditional methods [29].
Face-to-face group discussion provides a rich context in which participants respond to each other as well as the interviewer, and many features of everyday conversation are present. E-mail texts, however, lacks certain features of oral communication such as pauses, turn-taking and self-repair [52]. These areas have been highlighted by several authors, retrospectively [61-67].

Theme 4
Advantages, Disadvantages and Limitations to Online Data
Collection and Peer Support Groups
Whilst peer support groups, online forums, and social media platforms prompts various advantages for opportunities engagement and interaction, literacy, and language of patients between cohorts varies, and is also dissimilar to health professionals. When sharing evidence-based literature or context, unless it is information that has been ?diluted?, patients can feel anxious when they review posts, discussions, and threads, and professionals do not comprehend this understanding. There will be a cohort of patients that are more ?susceptible? to anxiety than others when identifying health information and support [68-70].

One U.S study explored the lived experience of pregnant women confined to home bed rest following a diagnosis of preterm labour using a virtual focus group to collect qualitative data. In this study written informed consent was obtained from all participants via mail. Participants were informed that they were welcome to contact other women in the study via personal e-mail, outside the context of the virtual focus group, if the contact was of mutual consent. The virtual focus group process generated detailed qualitative data. Three major categories and seven subcategories regarding the lived experience of home bed rest were identified: 1) The effect of bed rest on participants? lives, 2) the effect of bed rest on relationships with others, and 3) the virtual focus group as an online peer support group. The authors highlight that the virtual discussions are a useful tool for both collecting qualitative data and mediating the challenges and isolation of home bed rest. In addition, use of the virtual focus group enabled nurses to embrace technology via Internet to study and connect with this patient group as well as other isolated and understudied cohorts [66].

Collecting data online allows synchronous communication and reduces time and cost in terms of venues and travelling. It also offers opportunity to understand LTC groups and wider healthcare conditions [71]. However, there is potential for technical errors both before and during the discussions. For example, a participant may lose connection. In most cases, they are able to log back in and continue [29]. Internet access has become more readily available, so computer access for participants is becoming less of an issue [41]. In some rural areas, inadequate telecommunication services increase Internet ?drop out rates? but again, with developing technology, this problem is reducing. Whatever method is used adequate planning and clear explanations of decisions made during the conduct of the study can significantly enhance the validity and reliability of a project [52].

Data collection via the internet through online platforms is still relatively novel in the UK, however investigations have highlighted advantages, disadvantages, and limitations. Patients relying solely on peer support groups for educational support can be problematic because it potentially lead to misinformation without appropriate health professional involvement [72-77].

Theme 5
Using Qualitative Methodology to Understand Educational
Needs for CKD Patients Biomarkers
Relating lab tests and biomarkers, experiences being shared through RPSG revealed adult patients have not always understand the significance of investigations or results. For example, in adults, increased levels of keratinise and urea are a complication in patients with renal failure before haemodialysis. At the same time significant differences in levels of serum urea before and after haemodialysis have been observed. In children with CKD, proteinuria and serum creatinine only helps explain 32% variability of measured GFR decline [77-78]. More clarity surrounding CKD investigations, tests and parameters are required.

Biopsy
There is variation in understanding of surgery, including biopsy. Experiences being shared through RPSG revealed adult patients did not always understand principle of having a biopsy. Renal biopsy is safe procedure when carried out by using standard techniques. It can be used as an adjunct with other tests, and is considered as ?diagnostic cross talk?, in the case of antibody- mediated rejection. Renal biopsy can be beneficial for patients who have not responded and manage immunosuppression treatment. Sharing experiences revealed children have more robust immunological complications; they are at higher risk for transplant rejection. Post-surgery. For example, the most reported advance event is macroscopic haematuria. Management includes various dosing immunosuppression protocols, and this is not always understood [79-80].

Diet and Nutrition
Sharing experiences revealed adults are potentially informed kidneys have crucial role in breakdown and excretion of protein metabolites. However, education gap surrounds definition of high protein and renal complications, and how this has influence on intraglomerular pressure leading to higher GFR and increased renal blood flow [81]. Experiences being shared in KDARs revealed, it is a challenge to achieve the appropriate nutritional balance. Evaluation of children with CKD includes height, weight, body mass index and head circumference [82]. Assessment provides starting point and allows monitoring nutritional goals to meet the changing needs of the child. Different perspectives relating diet and nutrition between two groups and not all patients have access to a renal dietician.

Renal Replacement Therapy (RRT)
Sharing experiences revealed adults patients have concerns relating to different forms of RRT but more specifically surrounding education post-transplant. Ineffective management of post-transplant patients can result in graft loss. Medical care of patients on RRT have improved outcomes of transplantation [83]. Experiences being shared in KDARs revealed general information needs focusing on RRT. Due to effects of RRT, kidney failure has an impact on growth and endocrine system. In this group, experience highlight burden of CKD, life expectancy and quality of life [84]. Different perspectives relating RRT between two groups and need for wider AHP involvement.

Psychology and Related
Sharing experiences revealed adults patients have concerns surrounding Psychology and relating issues. Patients on HD have been shown to have higher symptoms of depression and anxiety than that on PD. It can be associated with procedural aspects of HD treatment such as spending long hours in medical environments and need to travel to dialysis centres. However, dialysis unit may prompt peer support among patients, and routine with staff can be beneficial in strengthening mental health and wellbeing 85]. Experiences being shared in KDARs revealed interventions should involve information and education needs focusing on psychology and strengthening mental health. For example, children/ young people with CKD and families could be prompted on the importance of potential benefits of routine psychological evaluations addressing different needs [86]. Understanding reveals Psychology services and professional access varies nationally between two groups..

Medication and Pharmacy
Adult dosing guidelines prompt conversion into pediatric dosed and adapt to patient?s renal function. The drug metabolism, absorption, and excretion are different in children than adults. Most of the studies on drug dosage in patients with renal failure are performed in adults. Experiences being shared through RPSG revealed adult patients have concerns relating to Medication and Pharmacy. Chronic acidosis has been associated with muscle weakness ? this leads to fatigue and falls, weight loss and increased bone reabsorption. Sodium Bicarbonate is a common prescription in RRT patients, however can lead to increased blood pressure and fluid overload [87]. Such context might not be provided during existing consultation scenarios. Experiences being shared in KDARs revealed, understanding is not always transparent as to why medication is adjusted according to creatinine clearance or glomerular filtration rate [88]. Where drug prescribing between and pediatric adult patients is concerned, clinical teams tend to consider multiple factors to drug dosing. Ranal Pharmacist access varies nationally and thus misinformation is an issue..

Lifestyle
Experiences being shared through RPSG revealed adult patients have concerns relating to Lifestyle education. Renal disease surrounds several guidelines relating best practice around CKD management, and lifestyle modifications. The effect of high salt intake increases the GFR and albumin excretion [89]. Paediatric patients with renal disease require lifestyle modifications and monitored renal team. Experiences being shared in KDARs revealed, adapting lifestyle changes are ongoing challenges. Quality of life can be affected across several spheres including physical and cardiovascular complications, neuron-development disorders, and psychological problems. Contextualising for some patients is an ongoing battle. Group consultations where patients have access to appropriate educational support and professionals would help prompt smarter care..

Primary Care (GP)
Experiences being shared through RPSG revealed adult patients have concerns relating to Primary Care and healthcare access ? there is a ?mixed picture. Relating, one study informs GP did not appear to recognize the underlaying presence of CKD. Integrated care through primary care should be an important component [90]. Experiences being shared in KDARs revealed nephrology team provides care in areas that have an impact on surround kidney, but not always able to help with family medical, social or economic stresses (which is where Primary Care is effective) [91]. Education through Primary Care involving wider AHPs could be effective for CKD patients..

Wellness and Wellbeing
Experiences being shared through RPSG revealed adult patients have concerns relating to Wellness and Wellbeing. Patients want to take better care of themselves and develop confidence on rely on family to cope with chronic condition. One investigation informs suggest that patients adapt to current position by developing coping strategies [92]. Experiences being shared in KDARs revealed that more education is required surrounding Wellness and wellbeing and impact of disease and its treatment [93]. Education focusing self-care and self-awareness is now being prompted because of experiences shared through peer support, but access to support information needs is missing..

Nursing
Experiences being shared through RPSG revealed adult patients want more focus relating to nursing care. Patients have various potential co-morbidities including limb pain. Limb pain may be associated with burning sensation, or itching, and in one study, 91% patients suffered from this [94]. This study shows association between insomnia and limb pain in dialysis patients and how areas surrounding renal nursing could be more involved for adult patients. Experiences being shared in KDARs revealed that nurses could optimize patient care through improved communication, and developing strategies to address education barriers [95]..

Exercise
Experiences being shared through RPSG revealed adult patients have concerns relating to Exercise. The lack of data on outcomes of physical activities on survival is perhaps just one reason that physical activity has not been introduced into the routine care of dialysis patients. The performance activity assessment is a first step in introducing dialysis patients in exercise program [96]. Experiences being shared in KDARs revealed that more education is required surrounding physical activity. Children/ young people and families require additional educational and motivational strategies in the implementation of an exercise programme. Additionally, it would perhaps be useful for children/ young people to have further understanding relating importance of exercise in relation to disease management [97]. This is an area that is now gaining momentum, but more could be done if professionals are available through online educational support..

Peer Support
Whilst both groups provide peer support in unique ways, unfortunately alone experiences and understanding being shared can lead to misinformation. Experiences being shared through RPSG revealed adult patients have concerns relating to Peer Support. Young and older adults feel that CKD impacts on identity and capacity to form relationships. CKD has been described as putting life ?on hold? [98]. Children/ young people and families require additional educational support and it was identified in once example; an understanding of infection control was important. In this context, vascular catheter is the most frequent area wherein bacteria can enter bloodstream. For paediatrics/ young people on PD/ HD patients ? bacteraemia is problematic. Peer support is effective, but alone it is ?just sharing experience?. Educational support would help prompt patients to be more involved in decisive care and actions..

Covid-19 and Infections
Experiences being shared through RPSG revealed adult patients have concerns relating to Covid-19 and Infections. There was lot of discussion surrounding this issue over the one-month topic tagging was taking place. Patients understood those on HD or transplanted, with symptoms of infection must be diagnosed, and those without symptoms should isolate and stay [99]. There was concern over little information or education they had been provided. Experiences being shared in KDARs revealed that more education is/ was required relating to whether allowed outside. There has been some evidence that viral injury to the kidney could alter immune response following virus infection [100]. Therefore, education surrounding infections is a key focus for paediatric/ young people and families, especially owing to terms such as ?isolation and ?shielding?.

Electronic Patient Records (EPRs)
Experiences being shared through RPSG revealed adult patients have concerns relating EPRs use reducing ownership of health. CKD management often requires coordination of care between physicians and health professionals across several specialties and services across allied health care. Effective EPR usage does help in exchange of information between health professionals [101]. However, different systems are used and thus there currently exists a lack of integration leading to gaps in healthcare structure. Experiences being shared in KDARs revealed that more understanding of how to use EPRs and how to access facility through healthcare provider is important. EPRs could be incorporated into clinical practice to alert providers of increased CKD risk and prompt effective implementation of health actions [102]. Education surrounding EPRs is still key and this could be provided through interactive online educational sessions.

Discussion
Retrospectively, methodologies for data collection have become more diverse and the way patients are encouraged to get involved in research is also becoming of wider intrigue. However, over two decades on, two important questions still need to be answered. 1) In the UK, is primary care ready to support patients via technology and e-health as highlighted by and 2) is there a role for wider AHPs to be involved in education provision for CKD patients in primary care? To facilitate patient engagement, this step should be accompanied by strategies to support patients interpret and ascertain education provision around disease trajectory. This would also build patient-professional communication [103-111]. Security and reliable connectivity maintained by the NHS is important ? this would allow faster transfer of information, so that patient care is better integrated between NHS services, ultimately providing education and prompt shared-decision making.

Conclusion
Patients between the two support group platforms have educational needs, and thus access to wider healthcare professionals online or otherwise would be important to support best practice in future. Wider AHP groups may increasingly find themselves taking on roles, particularly where involvement is increasingly dependent bridging educational gaps and ?alleviating misinformation? through technology and ?online spaces?. Kidney Care and Nomenclature is also continuously evolving, and thus it must be appreciated that patients should be armed with appropriate context and information so that they are able to have engaging communication and discussions with health professionals/ service providers [5]. To this end, it is now time that patients have wider access to different professionals to help bridge areas ?educational advice and support? [112-116].

Limitations
Whilst topic tagging has allowed a good understanding of where gaps in healthcare education for CKD patients could be bridged, qualitative data presented only provides a snapshot. Topic tagging for 1-month per social media platform, or more could have offered opportunity to identify more experiences between adult and paediatric support groups and thus helped conduct more in- depth analysis.

Summary
It is careless to presume that educational needs of CKD paediatric and adult patients, is only treatment related. Patients require education on diets, laboratory investigations, and fluid restrictions. CKD patients require education and resources on across several aspects of healthcare, and adjusting to ?new normal?, whilst navigating (and during) the many areas of this LTC. Patients and families will also require educational support surrounding guidance on self -care. Access to wider health professionals through technology can provide patients with educational support highlighting resources and evidence-base.

This UK retrospective snapshot study examined use of online methodologies to collect data and educational gaps between two social media peer support groups that have provided a platform for patients near two decades. Co-developing educational modules involving patients and professionals would prompt quality of joined up care in meeting information needs and addressing potential healthcare disparities. Online educational support would open access to wider AHP collaborations to support CKD patients, adults, and paediatrics. Whilst there is some novel educational projects and initiatives taking place, the UK is otherwise, behind in this effort.

PPI-focus had a positive impact on healthcare users. Those involved in co-creating research felt empowered, valued, listened to and positive about health experiences. Involvement also helped increase knowledge surrounding condition and developed life skills. A PPI focus has been advantageous for all involved; it increased understanding of evidence-based working and novel insights into collaborative efforts, thus allowing patients and research team to meet mutual goals and objectives.

Recommendations
? Researchers are encouraged to build opportunities for PPI-focused practices so thus to increase best practice and evidence-based healthcare
? Prospectively, online Multidisciplinary Team (MDT) and Group Consultations should be envisaged wherein education is also made part of follow up, involving wider health professionals. This would help integrate care and increase patient report outcome measures
? In the UK, patients and professionals should be proactively co- developing initiatives including joint Telehealth educational consultations. Such initiative should complement healthcare and peer support involving ?expert patients? to help provide supplementary care

What this work adds
? There are several ways to ensure robust data collection ? experimenting and implementing different online methodologies can widen recruitment and participation
? This study highlights educational gaps in ?technological age? for adult and paediatric CKD patients
? This study informs that in addition to online and peer support groups and social media platforms, there should be efforts to prompt educational support digitally, including webinars, podcasts, and other online medium to help bridge gaps to prompt informed decision-making
? Fourteen topics created and tagged is enough to begin creating educational modules to both complement clinical practice and integrate education into CKD care pathway.

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