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| Why I turned to social media for help after a double lung transplant Why I turned to social media for help after a double lung transplant | |
| (about 3 hours later) | |
| When my lung function plummeted overnight while on holiday in Japan, it was a worrying symptom that my body might be rejecting my transplanted lungs. Stuck on a 12-hour flight away from home, the first thing I did was turn to Facebook. | When my lung function plummeted overnight while on holiday in Japan, it was a worrying symptom that my body might be rejecting my transplanted lungs. Stuck on a 12-hour flight away from home, the first thing I did was turn to Facebook. |
| Since having a double lung transplant in the summer of 2013, I’ve been a member of two transplant support groups on the site, both run by fellow transplant patients. In these groups, strangers from across the UK, and sometimes further afield, provide each other with lived experience and advice on how to cope with having and managing a transplant. Even though it was 2am in the UK, five people replied to my post within minutes, all advising me not to panic, to call my transplant hospital and, most importantly, reassuring me it didn’t necessarily mean the worst. | Since having a double lung transplant in the summer of 2013, I’ve been a member of two transplant support groups on the site, both run by fellow transplant patients. In these groups, strangers from across the UK, and sometimes further afield, provide each other with lived experience and advice on how to cope with having and managing a transplant. Even though it was 2am in the UK, five people replied to my post within minutes, all advising me not to panic, to call my transplant hospital and, most importantly, reassuring me it didn’t necessarily mean the worst. |
| It may sound basic but, having never experienced a drop in lung function before (I have to measure it every day using a handheld machine), the experience of people who have been in the same situation was invaluable and helped me formulate an action plan. | It may sound basic but, having never experienced a drop in lung function before (I have to measure it every day using a handheld machine), the experience of people who have been in the same situation was invaluable and helped me formulate an action plan. |
| And I am certainly not unique in turning to social media for health support. Since its creation in 2010, 2.5 million patient experiences have been shared on the website HealthUnlocked, which works with health organisations including the online patient information site NHS Choices, to create online communities, or social networks, for health. Everything is discussed, from how to tackle health problems at work to everyday things like diet, exercise and sharing the emotional impact caused by health conditions such as chronic obstructive pulmonary disease (COPD), HIV and asthma. | And I am certainly not unique in turning to social media for health support. Since its creation in 2010, 2.5 million patient experiences have been shared on the website HealthUnlocked, which works with health organisations including the online patient information site NHS Choices, to create online communities, or social networks, for health. Everything is discussed, from how to tackle health problems at work to everyday things like diet, exercise and sharing the emotional impact caused by health conditions such as chronic obstructive pulmonary disease (COPD), HIV and asthma. |
| A 2014 survey of over 800 HealthUnlocked users found that 75% reported feeling more confident when speaking to medical professionals after using online peer support, and a third said they are seeing their GP less since having access to the site. Research from PatientsLikeMe, a similar online platform in the US, found that its peer support helped US war veterans with epilepsy feel better able to comply with taking their medication. | A 2014 survey of over 800 HealthUnlocked users found that 75% reported feeling more confident when speaking to medical professionals after using online peer support, and a third said they are seeing their GP less since having access to the site. Research from PatientsLikeMe, a similar online platform in the US, found that its peer support helped US war veterans with epilepsy feel better able to comply with taking their medication. |
| HealthUnlocked co-founder and chief medical officer, Matt Jameson Evans says: “Activation is the new buzzword in health. We are recognising that for people to engage in treatment and recognise the value of it, they need to feel more confident and have more knowledge.” | HealthUnlocked co-founder and chief medical officer, Matt Jameson Evans says: “Activation is the new buzzword in health. We are recognising that for people to engage in treatment and recognise the value of it, they need to feel more confident and have more knowledge.” |
| Early findings from an NHS study into “patient activation” (self-motivation) agree: “Improvements in patient activation levels … are associated with better self-management and lower healthcare service use”. Yet, to date, the NHS has only published official guidance for its staff on how to use social media, not for the individuals it treats. | Early findings from an NHS study into “patient activation” (self-motivation) agree: “Improvements in patient activation levels … are associated with better self-management and lower healthcare service use”. Yet, to date, the NHS has only published official guidance for its staff on how to use social media, not for the individuals it treats. |
| I now mix ongoing support on social media with continued care from medical professionals | I now mix ongoing support on social media with continued care from medical professionals |
| Dr Alf Collins, NHS England’s national policy adviser on person-centred care, believes that the uptake of social media tools by NHS commissioners has been patchy partly because of concerns about risk management. “A lot of doctors are worried about people getting the wrong information or misinterpreting the information they find on the internet,” he says. | Dr Alf Collins, NHS England’s national policy adviser on person-centred care, believes that the uptake of social media tools by NHS commissioners has been patchy partly because of concerns about risk management. “A lot of doctors are worried about people getting the wrong information or misinterpreting the information they find on the internet,” he says. |
| Looking ahead, Collins thinks the use of online peer support within the NHS will be driven by increasing recognition that it is a cost-effective way of improving patient health and welfare. He says: “I support people … seeking support via Facebook, but if we want [the NHS] to commission this formally and make it mainstream and funded, we need to have evidence of its effectiveness, which is probably best achieved through other partners.” | Looking ahead, Collins thinks the use of online peer support within the NHS will be driven by increasing recognition that it is a cost-effective way of improving patient health and welfare. He says: “I support people … seeking support via Facebook, but if we want [the NHS] to commission this formally and make it mainstream and funded, we need to have evidence of its effectiveness, which is probably best achieved through other partners.” |
| With the NHS running to catch up, charities have increasingly stepped in to fill the gap. Ruth Bardell, peer support project manager at Diabetes UK, explains how charities have had to adapt: “We realised that more and more people were using social networks and that there was free technology we weren’t using,” she says. Diabetes UK believes it is first in using Google hangouts to create a video-linked chatroom of up to 10 people a session to share tips and concerns about living with diabetes. | With the NHS running to catch up, charities have increasingly stepped in to fill the gap. Ruth Bardell, peer support project manager at Diabetes UK, explains how charities have had to adapt: “We realised that more and more people were using social networks and that there was free technology we weren’t using,” she says. Diabetes UK believes it is first in using Google hangouts to create a video-linked chatroom of up to 10 people a session to share tips and concerns about living with diabetes. |
| While Bardell is clear that peer support should complement, not replace advice from trained medical professionals, she thinks it is successful because people do not feel judged. “They [social media users] have all had different experiences with diabetes, but know what it is to have your own demons and successes.” She believes that Diabetes UK’s peer support network has already saved lives by, for example, helping people speak out when their diabetes complications had left them feeling suicidal. | While Bardell is clear that peer support should complement, not replace advice from trained medical professionals, she thinks it is successful because people do not feel judged. “They [social media users] have all had different experiences with diabetes, but know what it is to have your own demons and successes.” She believes that Diabetes UK’s peer support network has already saved lives by, for example, helping people speak out when their diabetes complications had left them feeling suicidal. |
| It’s hard to track how many people are using social media to help manage their health as, like my transplant chat groups, many networking accounts are set up by self-motivated individuals looking to attract people who share their health concerns. Informal groups are spreading across Facebook – one for anxiety has 194,000 members – with each group creating online communities that reinforce its use. For instance, I let members of my online support group know that a hospital check-up on my return from Japan confirmed my health scare wasn’t a long-term problem. And I mix regular support on social media regarding my transplant concerns with continued care from medical professionals. It is a model that needs to be actively encouraged if the NHS wants to help us control our own health, because it reflects the ways we naturally choose to interact with one another. | It’s hard to track how many people are using social media to help manage their health as, like my transplant chat groups, many networking accounts are set up by self-motivated individuals looking to attract people who share their health concerns. Informal groups are spreading across Facebook – one for anxiety has 194,000 members – with each group creating online communities that reinforce its use. For instance, I let members of my online support group know that a hospital check-up on my return from Japan confirmed my health scare wasn’t a long-term problem. And I mix regular support on social media regarding my transplant concerns with continued care from medical professionals. It is a model that needs to be actively encouraged if the NHS wants to help us control our own health, because it reflects the ways we naturally choose to interact with one another. |