A diagnosis of brain tumours is devastating. It usually strikes in the economically productive age groups and often prompts an individual and the family to reorient their lives completely. In this time of distress, confusion and anxiety, families need a sheet anchor to guide them effectively. The standard of care and support is different across the various geographies that often leads to disparities in outcomes. Likewise, overburdened healthcare systems leave little time even with the most empathic physicians to guide affected families effectively. Hence, most common recourse to get answers and support has now moved to online virtual communities and social networks.
It is imperative to understand these networks and to use these resources efficiently especially in the context of maintaining individual privacy.
The need for a social connect is fundamental to humankind. Internet eased this by erasing the geographic boundaries. Email, instant messaging, virtual chat rooms and message boards/forums were the forerunners and are still present in some form or the other. Facebook made its debut in 2007 and gradually gained mass acceptance. Unknown to most users, these social networks generate extensive data on their users to sell it to advertisers. Their privacy policies are difficult to comprehend for most lay users.
The question remains- should you join them because everyone appears to be there? For most users, it is a difficult question to answer adequately, because there is always a fear of missing out.
This guide is to use the Internet efficiently without a privacy tradeoff.
Let us start with the search. While Google defaults for the majority, I strongly suggest that you use DuckDuckGo (DDG) instead because it doesn’t track you. It also filters out a significant amount of spam websites so that you can search with confidence.
The following list should help you in this direction.
1) First determine the impact on finances, savings as well as potential loss of earnings. It is the most critical and often overlooked aspect. There are numerous buying options for health insurance. Rely on reputed news sources where they have explicitly outlined their conflict of interest if any.
2) Brain tumour charities and organisations have dedicated websites. In DDG, type “brain tumour charity” followed by region and you are likely to get good results. As always, never believe in whatever is claimed online and make your enquiries.
3) The next step is to understand what type of brain tumour it is; whether it is benign or malignant. Search DDG for a benign or malignant brain tumour. Ask your caregiver about various treatment options. Make notes if you don’t understand a technique. For example, an awake craniotomy. Search for “awake craniotomy patient education”. You also need to understand the deficiency or functional impairment that may arise out of surgery.
4) A rehabilitation specialist is an integral part of recovery post surgery. The search results are likely to unreliable in a majority of online searches as there is advertising involved. Hence you may need to consult your hospital directly. Your local organisation may also be able to help you in identifying individuals to ease a transition to home care.
5) An adjuvant course of radiation therapy may be required for specific tumour types after surgery. Again using DDG, search for “radiation therapy brain tumour” that gives appropriate links. If you have a choice of more than one centre in your area, go to the one where you feel comfortable with your treating physician. Please don’t rely on “online physician reviews”!(Remember the dictum, ”If it is too good to be true, it is probably not true).
6) DDG also displays results for videos. You may be curious about the technique of radiation therapy. By and large, most websites make it simple to follow with animations. Your caregiver will be able to fill in gaps in knowledge, as and when they arise. You are likely to get better search results with terms, “radiation therapy technique for brain tumour”.
7) Daily transportation may be a chore, and hence you are better off to look for directions on online maps. There is no particular recommendation, although Google maps show transit times and, in some areas, timing for public transport. There are numerous apps to book taxis as well.
8) Twitter has also become popular now with many users. It started out as a medium for sharing links and micro-blogging in less than 140 characters. However, it recently increased word limit as well as added some additional features. It has become popular with most brain tumour organisations and patient advocates who maintain an active presence here. The downside, for some users, is that it is confusing for novices although it is not a significant barrier for use.
Do a twitter search for “brain tumour organisations”. You can also limit your search geographically under “advanced search”. The listed names in search results are accounts that you can follow. The posts are called tweets that will start appearing in your timeline. The next step is to search for specific “hashtags”. For brain tumours, it is #GBM, #btsm #fightGBM #gliomas #braintumours etc. All tweets related to these hashtags appear in search (as well as the accounts using them).
9) Another way to use Twitter is to make public or private lists. An open list will notify the account that the individual is part of the list. For example, you can name your file as “a brain tumour” and add all related accounts to it. It will list tweets separately from your timeline. It is the best way to organise the flow of information. Each account starts with the prefix “@“. Whenever you tweet with the prefix @username, the person gets an appropriate notification. It is akin to calling out a specific individual in a noisy room.
The downside of using Twitter is poor engagement and is difficult to know if your tweet has been read and understood. The brevity of medium is its Achille’s heel.
10) Instant messaging like WhatsApp is familiar to most users but now owned by Facebook that governs its privacy policies. A further drawback is that in groups, phone numbers are visible that risks harassment and identity theft. A better upside solution is to use Telegram chat application instead. While the basic layout is similar to WhatsApp, it has Twitter-like functionality in groups. Telegram has channels that work as public broadcast lists. You can forward or copy links to specific posts to discuss it in the groups. Telegram also supports hashtags and “@“ prefixes, like in Twitter, and has a robust privacy model.
It is not difficult to navigate through these choppy waters. However, the most important thing is to have an open dialogue with your physician about these complex issues.
The doctor-patient relationship is paramount that no form of the Internet can replace.