Peer-2-peer healthcare: are we ready for a revolution?
I am very keen to hear about your experiences in relation to peer-to-peer support. What can we take away from this new and emerging form of healthcare that improves the lives of pwMS?
I am aware that many of you, i.e. people with MS (pwMS), are feeling very frustrated with the level of care and attention you are receiving from healthcare professionals (HCPs) and the healthcare system in general.
Many comments in response to my MS-Selfie Newsletters and case studies refer to COVID-19 induced changes in MS care, whilst others reference systemic long-term problems with the current MS service model. It is clear to me that the rapid adoption and implementation of digital healthcare tools, in particular, asynchronous communication channels, has created ‘digital haves’ and ‘digital have-nots’. This will inevitability increase inequalities in terms of access to MS care and as a result, some pwMS are being left behind, ignored and in some cases neglected.
Some of you, who I describe as empowered pwMS, are advocating for more peer-to-peer support networks to fill in the gaps. Is this good or bad? Is it right for pwMS themselves to plug the gaps in MS care that have been allowed to open up?
Before advocating for more peer-to-peer help how effective are peer-to-peer networks? On balance I think they are very good, particularly, when they involve the exchange of a relatively low level of information that has immediate feedback to close the loop. An example of this is the many user-maintained bulletin boards with Q&As around the use of new technology. In fact, these peer-to-peer exchanges are so effective that Amazon has built them into its user feedback in relation to specific products sold on its platform. The Amazon platform asks people who have bought a particular product if they mind being contacted by other purchasers, and users, of the product to help with any specific troubleshooting. In my experience, this has worked well for me both as someone who received advice and as someone who has given advice.
Reddit
Reddit a social network is a good example of a peer-2-peer support group. Registered members submit content to the site such as links, text posts, images, and videos, which are then voted up or down by other members. Reddit posts are organized by subject into user-created boards called "communities" or "subreddits", which cover a variety of topics including multiple sclerosis, which focuses ‘on issues facing people with MS and their family and friends. Conversations about support, research, drug therapies, nutrition, exercise, and more’.
Submissions on Reddit with more upvotes appear towards the top of their subreddit and, if they receive enough upvotes, ultimately on the site's front page. Although there are strict rules prohibiting harassment, it still occurs, and Reddit administrators moderate the communities and close or restrict them on occasion. Moderation is also conducted by community-specific moderators, who are not considered Reddit employees.
PatientsLikeMe
Another popular peer-to-peer support group is PatientsLikeMe, which is probably the world’s largest integrated community, health management, and real-world data platform. ‘Through PatientsLikeMe, pwMS share personal stories and information about their health, symptoms, and treatments, with a goal to improve the lives of all pwMS through knowledge derived from shared real-world experiences and outcomes. PatientsLikeMe takes things even further. Data generated by pwMS themselves are collected and quantified whilst also providing an environment for peer support and learning. The data is analysed and has led to 100s of studies in peer-reviewed medical and scientific journals’ (source Wikipedia).
In the early days when PatientsLikeMe had only just been launched, many of my patients, who had joined were bullied by a small group of members when they spoke out against CCSVI (chronic cerebrospinal venous insufficiency). Like most social initiatives, be they clubs, institutes or associations they tend to become dominated by small groups of people who may or may not have a specific agenda they want to advance. I have been told that these sorts of issues have largely been resolved by community moderators.
Facebook
Another very popular platform for peer-to-peer support has been the explosion of issue-specific Facebook groups many of which are private. These cover many topics related to MS. As these are private it is very difficult to follow what is being shared within these groups. I have many examples of advice and information that patients of mine have been given via some of these groups that were simply wrong. The potential danger of Facebook Groups was recently highlighted by parents being told that bleach will cure their autistic children (see BBC 16-Jan-2021).
During the height of the CCSVI crisis, I remember being told by one of my patients that I was been talked about in a very negative way in one of the CCSVI Facebook groups; apparently, I made it to position five on the list of HCPs to be targeted by trolls. The latter led to me being reported to the GMC (General Medical Council) three times, being reported to my Univesity of unethical behaviour and my research integrity was being falsely called into question. I eventually had to hire a lawyer for professional advice and fortunately my colleagues, the GMC and my University supported me and dismissed the claims and the final freedom-of-information request in relation to my research integrity as being vexatious. One Canadian neurologist had death threats and had to take six months off work due to stress at the height of the CCSVI crisis.
Unintended consequences
It is important for you to realise that in healthcare peer-to-peer support is rarely a simple question and answer loop and often involves the interpretation of information and more often than not a measured and personalised response. This is why peer-to-peer exchanges may put some pwMS at risk of unforeseen and unintended consequences.
For example, Desmond, who has advanced MS, complains in a chatroom of feeling isolated and ignored. After receiving a sympathetic ear from Matilda, who has less advanced MS, he accepts that he is likely to be depressed. Desmond takes Matilda’s personal advice, based on her worldview and personal experiences with mild MS-related depression in the past, literally and self manages his depression. Unfortunately, after several weeks his mood deteriorates. At some point after weeks of online discussion Desmond admits to Matilda that he can’t go on and is contemplating taking his own life. Matilda tries to escalate the issue and recommends Desmond contact his GP urgently or attend his local A&E. Desmond agrees to try. Sadly, Matilda logs onto the chatroom discussion the next morning to read that Desmond couldn’t get an urgent appointment with his GP and decided against attending A&E as nobody cares about him and his MS. Desmond signs off the note with a thank you and goodbye. Matilda realises that this is likely to be a suicide note. With no personal contact details, she has no way to contact Desmond. She picks up the phone and dials 999.
Although this scenario is fictitious it highlights the limitations of both peer-to-peer support and the potential failings of our healthcare system. So if you are about to register with a peer-to-peer support group set limits on what you are prepared to do and please double or even triple check the information and advice you are given using reputable sources. Although we live in the era of democratised knowledge, not all knowledge is correct. If anything sounds too good to be true it is likely to be false. Please don’t hesitate to ask me via the MS Selfie platform about any information you have been given. As long as the issue involves the self-management of MS I will endeavour to respond to your questions in a timely manner.
Please be wary of healthcare evangelists and healthcare vigilantes. The evangelists tend to be selling a product and the vigilantes have an axe to grind. The vast majority of MS HCPs are singing from the same sheet as you; we simply want to do what is best for you given the resources we have. This is why it is so important to view the management of MS as a partnership and for us to face the post-COVID-19 challenges together.
I am very keen to hear about your experiences, both positive and negative, in relation to peer-to-peer support. What can we take away from this new and emerging form of healthcare that improves the lives of pwMS?
Subscriptions
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General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust. The advice is intended as general advice and should not be interpreted as being personal clinical advice. If you have problems please tell your own healthcare professional who will be able to help you.
Prof G. I think your own example and the Desmond/Mathilda scenario express exactly what I think. I have never been a joiner and choose not to be on social media, but that's OK for me, maybe not others. However, the current crisis in this milieu; trolling, badmouthing anonymously, support my position. What HCP would want to be subjected to this? You needed to hired legal help. Another HCP experienced sufficient stress to be off work for several months? Those who choose to attack anonymously on Twitter, Facebook and other platforms, appear to be very destructive and, worryingly, powerful enough to recruit their own constituencies. It's fine for me to eschew these platforms, but I'm well enough and robust enough not to need them. I also find plenty of online support via all the legitimate agencies concerned for pwMS; Barts, the MS Trust and Society and ShiftMS and OMS, though I don't follow the OMS life-style slavishly, reasonable though it is. It is also important to remember that groups can form that are malign despite seeming to be innocent enough initially. In other spheres we have seen the effects of online radicalisation, mysogyny and extreme political views. Their influence evolved subtly and sucked the naive and easily influenced in over time.
So there is a huge amount of bona fide MS advice online. The trick is to sort the wheat from the chaff. It must be tough if someone is lonely and desperate for information. The need to connect is a basic human one. If people are drawn to online groups they need to have positive experiences from them just as they do in face-to-face ones and the digital divide makes that tougher. Face-to-face can cause upsets just the same, but you know who is the problem. In the pandemic we have moved over to our computers, but that excludes the digital have-nots. It is a problem that will divide and upset in equal measure, but that's human nature I suppose .
I have moderated a couple of peer to peer support groups online, including co-hosting an online MS women’s group. I remember the days of CCSVI and the heated exchanges on some forums. I had to keep a tight lid on that particular powder keg in terms of moderating comments on the forum where I was an administrator. In general, I have found most forums to be supportive but I think it depends on good moderators, keeping a close eye on information being exchanged and being quick to intervene and to signpost to evidence based information. I volunteered for 10 years for a Helpline for an MS charity I quickly learned how important accuracy is when supporting others