Re: Social networking: reshaping the doctor-patient relationship
The Addison’s Disease Self-Help Group (ADSHG) supports the Kate Granger Hello-my-name-is campaign to promote better doctor-patient relationships. This social media campaign originated with a young doctor who found herself a terminally ill patient, and had its modest beginnings on Twitter. We hope that the ADSHG can play a small part in sustaining it. You can read more here: http://hellomynameis.org.uk
Our charity established a members-only online discussion forum in 2008, as an extension of the group’s existing support activities in hosting face-to-face meetings, a subscribers’ newsletter and a publicly available website. In the 8 years since then its launch, the ADSHG forum has attracted just over 3,000 individual subscribers and logged over 27,000 posts. While some of those subscribers have since lapsed, the total is equivalent to around one-third of the estimated catchment of 9,000 diagnosed Addison’s patients across the UK – no small achievement.
As Stephen Armstrong (Social Networking for patients BMJ 2016;354:i4201) observes, social media allows people with rare conditions to connect and share experiences, especially where unstable health can make travel difficult, The most people online at once, either within the ADSHG’s private forum or browsing its public website, was 443, on Thursday 18 July 2016. The largest number who have ever come together for an in-person meeting is 180, at the group’s 30th anniversary AGM and medical lecture, held in London in 2014.
The group’s online forum allows people to vent about the frustrations of their medical condition/s in a safe way. Thus, the ADSHG does not encourage doctors to subscribe to its forum – other than in a personal capacity, where they or their loved ones are steroid-dependent. It also operates a strict “no blame game” rule, whereby only positive recommendations can name an individual clinician.
Like most established charities, the ADSHG forum is supervised by experienced volunteer moderators who – largely by example – ensure that similar rules of social courtesy are upheld online as would be expected for an in-person encounter. The ADSHG’s experience has been that many people newly-diagnosed go through an early stage of anger and anxiety at the uncertainties of their condition, before they go on to develop the self-management skills that will allow them to lead life to its fullest.
The forum can be a place to help people explore tactics that will allow them to engage collaboratively with their medical team and avoid adversarial or mistrustful relationships becoming entrenched. It is also a place where the day-to-day practicalities of medication dependency can be discussed, in more detail than the time constraints of a face-to-face medical appointment allow. The most popular topic to date within the ADSHG forum has been the 2014-15 shortage of liquid injectable hydrocortisone – a vital emergency treatment – within the UK, which has been viewed by 1,917 members.
Not everyone with a long-term condition feels the same need to take control of their condition. For those who are motivated to become expert patients, the ADSHG forum allows people to pool their insights into a seemingly Darwinian spectrum of endocrine practice, both within the UK and internationally, where diverse habitats and resources have created some distinctive ecological niches. Today, it is possible for a well-informed patient to know more about the range of clinical practices in other hospitals than the medical professional sitting across the desk, while other patients may prefer a more passive approach to decision-making about their treatment. Communication and coaching skills thus become a more important part of the clinician’s skillset, alongside their technical expertise.
The Addison’s group uses a Facebook page to raise awareness and reach out to the wider international community. However, the group’s website and private members forum remain central to its charitable remit in providing quality information and support. Concerns over private medical information usage and ownership by the large social media companies, along with the wish to maintain an independently-hosted, high quality and moderated support community, were key factors in adopting this approach. A venture by the English Department of Health into patient forums, through a public-private partnership with Health Unlocked, similarly failed to meet the ADSHG trustees’ confidentiality requirements, and our charity was not motivated to migrate its private online community into the arms of a commercial enterprise.
More recently, the ADSHG has begun to develop real-time social media dialogue with the medical community, through a programme of quarterly Twitter Chats launched in early 2016.
The next Twitter event is planned for Sunday 11 September, 7 – 8pm, hosted by https://twitter.com/addisonsuk.
We welcome participation from GPs, ambulance crew and community pharmacists especially. Please join us if you can!
Competing interests: No competing interests