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The number of people living with a long-term condition is increasing worldwide. Social media offers opportunities for patients to exchange information and experiences with others with the same condition, potentially leading to better self-management and improved patient outcomes, at minimal costs to health service providers.
This paper describes how an online network with a range of social media platforms was created, with the help of a group of patients with chronic kidney disease and specialist professionals. The project considered whether information needs and health-related and social outcomes were met.
We performed a longitudinal in-depth evaluation of the creation of the moderated network, observation of the use of the platforms, self-efficacy surveys (at baseline and 6 months), and semistructured interviews (at baseline and 6 months).
A total of 15 patients and professionals participated in the co-design of the network (hub), which was initially launched with 50 patients. Several platforms were needed to engage patients at different levels and encourage generation of information, with the support of moderators. In addition, 14 separate patients participated in the evaluation. Satisfaction of information needs through social engagement improved self-efficacy (n=13) with better self-care and management of illness. Social outcomes included seeking employment and an increase in social capital.
An online network (hub) with several social media platforms helped patients with chronic kidney disease manage their condition. Careful co-designing with users resulted in a sustainable network with wider applicability across health and social care.
The increase in long-term conditions is seen as the greatest challenge faced by health systems globally [
Information provision for patients often occurs as a result of a problem or symptom as well as dependence on the specific needs of the patients. “Information need is a recognition that your knowledge is inadequate to satisfy a goal that you have, within the context/situation that you find yourself at a specific point in the time” [
Research acknowledges that effective provision of information is a determinant in helping people self-manage their own illness [
Social media provides opportunities for user-generated peer content, which embraces knowledge transfer (eg, advice, information, and resources) and support (eg, companionship) to address patient engagement, access to information, and positive outcomes. This model of information generation moves away from clinician-led information provision to patient-generated information in order to support patients’ needs and positively influence patient self-management [
Research suggests that social media can be used in long-term conditions to exchange information and trigger positive outcomes [
This study therefore aimed to use a variety of linked social media (a hub) to encourage patients with chronic kidney disease in one area of the United Kingdom to generate (post) information and respond to the contributions of others. A social media hub was co-designed with patients and then evaluated to determine whether it met patients’ information needs and improved health and social outcomes.
The project used a realist [
Ethics approval was obtained from the University of Salford, who hosted the study and the system used within the UK Health service (NHS Research Ethics) prior to recruiting patients in the longitudinal study. All participants involved in the longitudinal evaluation study provided written consent.
The study took place in the North West of England, following meetings with the local Kidney Patient Association, patients, and carers recruited via local health care professionals from a large teaching hospital. A total of 15 users (patients, carers, health practitioners, and researchers) engaged in the co-design of the social media hub (online network). A launch event was held with 50 patients to provide training, and the majority signed up to join the hub and Facebook group. For the longitudinal evaluation, 17 separate patients with chronic kidney disease and 1 carer were recruited via the local Kidney Patients Association, Facebook, and word of mouth. Patients were eligible for inclusion if they were aged over 18 years, had chronic kidney disease (predialysis, hemodialysis, peritoneal dialysis, or transplant), were recommended by a health care professional, could provide written informed consent, and could read and write English. A theoretical sampling approach was used to ensure a mix of ages, gender, and stages of kidney disease and to ensure that this sample group did not overlap with those involved in the design. The carer was included because he used the Greater Manchester Kidney Information Network (GMKIN) on behalf of his non–English-speaking mother. To maximize inclusion, patients with no access to technology (n=7) received an iPad and additional training to facilitate participation. Four patients dropped out (two did not engage at all and two could not take part in the final interview due to illness). Over the period of the evaluation, health professionals and patients were free to join and use the hub, contributing to hub activity, in general. It is not possible to calculate the number of users of the hub over the evaluation period, but activity in the hub in this time frame is presented in
Overview of the sample. GMKIN: Greater Manchester Kidney Information Network.
Meetings with the Kidney Patient Association, patients, and carers identified a clear need to find innovative ways to enable patient access to health information and support. Findings from previous research [
Initial consultation with patients and health professionals, reviewing social media platforms, and a potential hub to support patient-centered care and self-management
Presentation of hub and discussion on color scheme, usability, and accessibility (create accounts, write and share posts, add comments) and integration with social other social media platforms
Platform testing and virtual meeting (using Facebook) to refine the hub before releasing it to the public
The hub was named GMKIN and incorporated social media platforms with active users (Facebook), advocacy (Twitter), blogging, and a forum (
In line with most existing Web platforms that moderate posts and comments before publishing [
GMKIN Platform: Blogs (patients’ stories) were screened prior to publication on the hub. Those with potential health risks were referred to a multidisciplinary group of health care professionals who signposted patients to a relevant service. Comments posted relating to blogs were approved by either the moderators or the author of the blog.
GMKIN Facebook: Moderators screened each post following update notifications.
The manager actively encouraged and motivated members to take an active role in the GMKIN to influence community growth and foster underlying psychological bonds. Community commitment and relationship building were facilitated by using the principles of social capital (bonding, bridging, and linking) [
Phase two aimed to explore patients’ engagement with the hub, information generation, and health and social outcomes.
Quantitative and qualitative data collection tools (
This created an in-depth rich triangulated data set from which to draw the conclusions.
Data collection methods.
Data collection method | Tool | Purpose |
Quantitative Self-efficacy scales (two scales; at 0 and 6 months) |
General Perceived Self-Efficacy Scale [ Self-Efficacy for Managing Chronic Disease 6-Item Scale [ |
Used as a barometer to identify the difference in self-efficacy after becoming involved in the GMKIN |
Activity data/researcher observation |
Complement weekly logs by collecting activity data (eg, inbuilt analytics within the website software [WordPress plugin]) and monitoring engagement via manual monitoring of Facebook and twitter | Create individual profile of monthly activity and interactions and identify platform usage |
Qualitative interview at 0 and 6 months | Semi-structured interview |
Understand the context of each patient entering the study and gain in-depth knowledge on key themes explored: levels of engagement, role of each platform, information needs, and outcomes |
Patient logs/blogs (throughout) |
Blogs posted on the platforms (using WordPress). Self-reported weekly activity logs, using Google docs, of GMKIN activity to capture rich descriptions of “ |
Understand levels of engagement, what works, and why |
The data were collected, analyzed, and synthesized by the GMKIN Manager and lead researcher (CV). Methods to reduce bias included multiple methods of data collection (eg, checking interview statements against patient activity) and checking coding of interview transcripts with other members of research team.
The quantitative data from the self-efficacy scales were analyzed to determine the mean score of the six items by using descriptive statistics in Microsoft Excel (Microsoft Corporation, Redmond, Washington). The higher the score, the higher the indication of self-efficacy. A
Activity data were collected using a WordPress plug-in for patient blogs and manual observation of Facebook posts and Twitter feeds.
Baseline and 6-month data were analyzed using a case and thematic analysis to describe and map conceptual findings [
A framework (matrix) approach was used to synthesize cross-sectional descriptive qualitative data using the following steps:
Matrix development from themes identified from a literature review [
Theming and mapping the interviews against the framework. The matrix was expanded to include the new themes.
Data were compared and contrasted across individual cases to explore contextual factors and patient outcomes.
Activity data were used to create individual case engagement logs.
Activity data revealed three engagement roles: influencers, conversationalists, and browsers [
Self-efficacy trend for Self-Efficacy for Managing Chronic Disease 6-Item Scale and General Perceived Self-Efficacy Scale.
Patient |
GMKINa role |
iPad access |
Age group |
Modality |
Gender | CSEb | GSEc | |||
Change in self-efficacy | Change in self-efficacy | |||||||||
P1 | Influencer | No | 51-60 | Transplant | Male | +d | 0 | + | .1 | |
P2 | Browser | Yes | 51-60 | Dialysis | Male | + | .46 | + | .05 | |
P4 | Browser | No | <30 | Carer | Male | + | .7 | + | .1 | |
P5 | Browser | Yes | 41-50 | Dialysis | Male | + | .03 | + | <.001 | |
P12 | Browser | Yes | <30 | Predialysis | Female | + | .03 | + | .002 | |
P8 | Browser | No | >61 | Transplant | Male | + | .03 | No change | Not applicable | |
P6 | Browser | No | <30 | Transplant | Male | + | .36 | –e | .1 | |
P14 | Browser | Yes | 31-40 | Dialysis | Female | – | .14 | + | .03 | |
P13 | Browser | Yes | 51-60 | Dialysis | Female | + | .08 | – | .61 | |
P7 | Browser | No | >61 | Predialysis | Female | – | .08 | + | 0 | |
P3 | Conversationalist | No | >61 | Predialysis | Male | – | .47 | + | .6 | |
P11 | Conversationalist | Yes | 41-50 | Dialysis | Male | – | .01 | + | .06 | |
P9 | Conversationalist | Yes | 31-40 | Predialysis | Female | + | .79 | – | .002 | |
P10 | Conversationalist | No | <30 | Predialysis | Female | – | .04 | – | .008 |
aGMKIN: Greater Manchester Kidney Information Network.
bCSE: Self-Efficacy for Managing Chronic Disease 6-Item Scale.
cGSE: General Perceived Self-Efficacy Scale.
d+: increase in self-efficacy.
e–: decrease in self-efficacy.
Regardless of engagement role, patients’ information needs were satisfied and outcomes were improved as described below.
Patients reported in interviews that the patient-generated content shared in the form of blogs, posts, and tweets provided them with valuable information. Most respondents identified that through the GMKIN, they gained an understanding of the condition and its living implications:
I think it’s kind of triggered me to go and look at other things, and go and find out things, and I’ve learnt things that I didn’t know; like now, I know that there is, you can do home dialysis, which I never thought of.
They learned about the different treatment options such as hemodialysis (HD), peritoneal dialysis (PD), home dialysis, and monitoring the progression of the disease:
To be quite honest with you I did not know the difference between HD and PD, I do now, but even before dialysis, that was it, I did not realise that were different forms of dialysis and this is something I picked up – just an example there are many things I picked up.
Accessing information such as new clinical developments and people’s positive stories provided patients with the mechanisms to cope with the condition and give them hope for the future:
I have learnt this from a lot of people listening to their story that in relative terms my journey has not been easy but it’s been absolutely a piece of cake compared to what other people gone through and that’s made me realise perhaps my quality of life is better than what I was perceiving it beforehand.
Patients explained how other people’s stories and updates helped them identify their own symptoms and develop management strategies:
The long-term effect of kidney disease is one of those things you don’t really know about...I read yesterday a link to her [patient] own blog, about anti-inflammatories, which I found quite interesting because I suffer a lot with sinus problems and I take anti-inflammatories which are bad for kidney...but they never tell you why, so I found out... I thought - I have been fine I have used them before so to take them again will not be too bad - but reading the post its best not to.
The interviews demonstrated that patients were unaware of their information deficits. Some indicated that they had been told that the illness had progressed, but they only realized the implications after seeing other people’s symptoms on GMKIN:
I didn’t realise that the pains in my legs was due to my kidneys until somebody was writing it on.
Importantly, engaging via the GMKIN gave patients confidence and a purpose, believing it could help others:
It has given me purpose… it has given me more focus. I have not allowed things like fatigue or lack of concentration to stop me. It has given me a motivation that was missing before that motivation is primarily to help others. I am feeling like genuinely helping other people, I think that is the essence of what we are like human beings this gives us the opportunity, GMKIN gives the opportunity to do it.
Some patients, especially those new to chronic kidney disease, found the information overwhelming, but synthesized information pertinent to them to manage their condition better:
I’ll stop reading, then I try to put what they have said into my own mind to stop me doing certain things that I should not do to help to keep my kidney function.
Discussing things like drugs or having discussions about the problems with getting supplies delivered…I really, really struggled and I’ve got to the part where I was talking to my partner and I was considering phoning you up and saying: No, I don’t want it.
The study revealed a positive impact on patient’s self-efficacy and self-management, which can be seen as a means toward achieving more quantifiable health outcomes such as improved kidney function. These are reported below, and in more detail, using patients’ stories in
Shared (vicarious) experiences and social persuasion contributed to an increase in self-efficacy, a key feature in the management of long-term conditions:
I think it helped me that he is going through so much and has dealt with the condition for such a long time and lived a positive normal life.
Furthermore, patients who engaged with GMKIN reported better ability to self-manage the condition:
Watching and listening to what others are saying has helped me to sort my life out by managing my diet.
Patients reported other psychological benefits including increased confidence and feeling generally better about themselves.
It’s almost been like a snowball effect, because once I’ve got over the kind of the shock and I dealt with things I recognised how the community on GMKIN was actually really helpful…and because I’d dealt with my issues I felt comfortable in getting involved in other things and that has increased my confidence.
I don’t think I would have engaged with her before GMKIN I would not have felt confident enough in myself to be able to hold my own in a conversation with someone who clearly knows a lot about not just programme management but also renal problems and that is given me enormous satisfaction but again added to the boost in self-confidence.
Accessing peer stories (although overwhelming for some) encouraged participants to make changes in their self-management to preserve their kidney function:
The condition and anything I can do to maintain a healthy lifestyle: eating the right food, drinking the right things, where to get travel insurance from, just general day to day things which is helps.
In addition to health, GMKIN engagement demonstrated an impact in a range of social areas. A number of patients reported that they were now considering employment:
Entertaining the idea of getting some proper employment again and that would be an achievement. I never thought I do certainly giving the past 10 years in my life already didn’t think I could get to that point again.
‘I applied for two jobs one with the kidney association, one of them I had to write things down, like an email.
Patients who received an iPad acknowledged that it was enormously beneficial. One patient indicated that the iPad is his lifeline, which enabled him to be socially connected:
This is my lifeline [iPad]...this [iPad] is everything in one and then if you don’t want to watch anything at least you can look at someone else’s feelings read their things on GMKIN and if you want to know medical things, diet things everything is in one place, just look you don’t have to get bored.
Another indicated that it enabled him to gain an interest in drawing:
I had never drawn so much then I had these past. Well I suppose since I’ve got the iPad, really. It’s influenced me a lot and my life and it’s helped me to sort of put away the troubles and stuff and just concentrate on the drawings.
The affiliation with the community through bonding, bridging, and linking mechanisms such as light and friendly conversations (welcoming messages), social support, and the human touch (personal photos) suggested that GMKIN enabled trust, social camaraderie, friendship, and affection (or social capital) to be developed:
I just think it is amazing that people had the time to kind of develop something good for the condition, it is really nice that people are going on there and helping each other through, in this day and age when you read all this horrible stories and there isn’t much of social camaraderie really that people are taking the time and effort to support complete strangers through the condition.
...bond in the sense, you know all this people, a bit of empathy and a bit of you know obviously banter and that it is good.
This study used longitudinal data sets with a variety of quantitative and qualitative methods to enhance validity and rigor (
Overview of the findings. GMKIN: Greater Manchester Kidney Information Network.
The findings are in line with previous research in that social media contributes to an increase in self-efficacy [
Although previous research highlighted that Facebook and blogs contribute to information generation [
This study also exposed that patients had unknown information deficits; for example, a participant indicated that he had not known about the different forms of treatment available until he read it on the network. Others measured themselves against patient stories and realized that they were not as ill as they had previously believed. By being part of the community and disclosing information, patients learned about their illness and how to self-manage it.
The GMKIN did not appear to work for everyone: Two patients dropped out because it was not fulfilling their needs and one remained in the sample but suggested in the interview that it did not work for him personally.
Although the study appeared to facilitate better health outcomes as a result of self-management, it is not clear whether this is directly linked to an increase in self-efficacy, as the quantitative findings are too small to be generalizable. However, the self-efficacy scores were used as a barometer to discuss self-efficacy further with patients and these qualitative data from interviews and direct observations of patients were in line with the quantitative scores.
Although not measured in the evaluation, one of the most significant outcomes of the project is a patient-led expansion to other UK regions. Patient-generated evidence of impact (
This mixed methods longitudinal study successfully co-designed and implemented a social media hub with patients and practitioners on the basis of the theory on engagement [
Gmkin link.
Patient voices.
Uptake of gmkin.
Uptake rheumatic and musculoskeletal conditions.
Self-Efficacy for Managing Chronic Disease 6-Item Scale
Greater Manchester Kidney Information Network
General Perceived Self-Efficacy Scale
hemodialysis
peritoneal dialysis
We would like to thank the British Renal Society and Hope Kidney Patients Association (HKPA) for funding this study. The HKPA facilitated access to patient networks. Staff at the Salford Royal NHS Trust, Renal Department, provided professional support and guidance for hub content and moderation. We are particularly grateful for the continuous support, dedication, and expertise given by Rob Finnigan, a patient with CKD. The work was recognized through prestigious awards: Innovation Champion Award for best use of social media in 2015 and BigChip Awards - Best Tech for Good, 2018.
None declared.