Many of my patients have no interest in going online, because they can’t trust the cancer information they find through Google, or learn where to find it. What if a structured system of hashtags helped make it easier?
Tagging has been around a long time as a method of organizing content. Twitter had given it more immediacy for real-time events – whether it’s a tweet chat, a natural disaster or a sports event. Now many emerge spontaneously, and in a recent survey more than half use hashtags regularly, with a third using them to conduct searches online.
When these tags emerge spontaneously, they are part of a folksonomy – user-generated organization. Spontaneous hashtags are fine to highlight a meeting, but when discussing a specific disease I believe there is value in an organized system for reliability and consistency. So I proposed a cancer tag ontology, a top-down system which I have shared on Twitter based originally up #bcsm, a robust breast cancer community. With the help of Patricia Anderson (@pfanderson) and others, it’s been improved to make it more practical.
Symplur has now made the cancer ontology available to you. And my patients. And caregivers. And clinicians. Researchers. Marketers. Software developers. Journalists. Everyone.
This structured system allows us to narrowcast to people interested in a certain disease on an open social network. We can search for health information, share new research or products, and connect for advocacy. It gives us a simple, effective way to organize disease-based content. Here is a current outline:
Top-down approaches aren’t supposed to work. But the response has been remarkable. Both MD Anderson Cancer Center and the American Society of Clinical Oncology have started using it. New groups are starting to use the other tags for new tweet chats around lung cancer, gynecologic cancer, and multiple myeloma.
Part of the reason it may be working: people want to find reliable information – Google can’t provide it. But a structured hashtag system with user-based contributions, give each tag meaning. With increased use, it develops authenticity and value as a reliable resource.
Organizing oncology on Twitter with hashtags does have challenges. But if we can develop a system works for cancer, I have a proposal for cardiovascular disease next. I think it may permit more of my patients and colleagues to find reliable information online.
What do you think? Where does this approach succeed or fail?
11 Responses to “Hashtags in Cancer Care: Embedding Meaning in Digital Health”
Jenn Lonzer
The thing about hashtags is that anyone can use them and no one can control what happens on Twitter. For me, Twitter is a place for conversations and trends. I don’t use it to research my medical conditions. That said, I think your idea is a great way to organize new information and discussions as they occur.
As a physician, do you recommend that your patients read about their conditions online? If so, do you have specific sites to which you send them? With all the time people spend in waiting rooms and exam rooms, I think there’s a lot of opportunity for patient education. Perhaps in the form of brochures/posters that they can take home with them: a little info on their disease, but more importantly QR codes and/or a list of websites that your practice has found to provide accurate and helpful.
Matthew Katz
Jenn, thanks for taking time to read the post and share your thoughts. I agree that Twitter is not ideal for medical research. It’s ephemeral and good for interaction, but the public nature of activity on an open social network isn’t for everyone.
But there are a lot of people who are searching and sharing. And Twitter makes it easy to lead people to content elsewhere. Though not perfect, hashtags work on Twitter to make finding disease-based information or similar people to you easier.
Even as a doctor, I find it hard know which are the best sites for every malignancy. Many of my patients don’t have any interest at looking for information online and are perfectly comfortable with what they learn from a brochure from American Cancer Society or National Cancer Institute. But I’m still in the process of trying to learn the best way to aggregate options for my patients. Any suggestions are welcome!
Pat Elliott
Good to see this conversation. Yes, the hundreds of thousands of unrelated, non-vetted and agenda-driven links that show up in a Google search are not in the best interests of patients. The core issue is that most people are not well versed in how to sort the helpful from the hype, whether from search engines or a Twitter feed. The reality, however, is that online resources are often the best resource for patients who do want to be informed and do manage their own health, and we should be looking at better ways to support them. As a patient living with a rare form of leukemia I’ve found the information I get online is far more comprehensive, current and accurate than that provided by my oncology team, which has to keep up with many forms of cancer. While I applaud bringing more structure, I don’t think it goes far enough. For example, it lumps all leukemias together as #leusm just like search engines and the mainstream media and many online communities lump all leukemias together. To be more useful to the patient or caregiver, whose energy and cognitive abilities are not the same as a healthy person, the system should also look at using additional hashtags for the specific form of cancer. That would make it easier for patients and caregivers to find the information that’s most relevant, just as patients need to narrow the search terms in using Google to get the most useful results.
Matthew Katz
Pat, thanks for your comment. I am glad you see some value in it. I too think there is a lot of valuable health information online, it’s just how to make it easier to find. I appreciate your point about possibly not going far enough. Like you I thought it might be more helpful to get very specific. I initially proposed that on ASCO: http://connection.asco.org/Commentary/Article/ID/3590/Hashtag-Folksonomy-for-Cancer-Communities-on-Twitter.aspx
In online and in-person discussions, I’m not sure that that degree of narrowcasting is viable on Twitter right now using a highly specific hashtag. If some system is widely adopted and disseminated, then it will be mainstream enough perhaps to be more focused. But there are other platforms which may work better than Twitter. There are also issues still with how many people want to search online, and to what degree they want to publicly share a private matter.
If this system works, then there will be opportunity to develop further. But hopefully this initial step will open debate and prompt further improvements.
Eve Harris
Matthew, one can *adopt* but what one can’t do (at least currently) on Twitter is *enforce.*
Since I’m something of an old-timer in #hcsm, I have seen the signal to noise ratio deteriorate over time. But the signal strength has facilitated some remarkable exchanges, most notably #bcsm.
Matthew Katz
Hi Eve, you’re absolutely right. As an open network, Twitter is great for bringing a lot of people together but not at filtering noise. Closed social networks or forums may be better at facilitating in-depth discussions/arguments that go deeper than you can on Twitter. But they limit participation. #bcsm served as a model for this system, although the cancer experience has different hurdles for different kinds of malignancies. So each disease will have a disease-specific design structure that may work best for those patients, caregivers, clinicians and others.
Jim Cleary
Matt,
I struggle with this a little. When I see #….sm, I assume the discussion is regarding social media. #hpm is about Hospice and Palliative Medicine. I would see #hpmsm as being about the use of social media in #hpm. #bcsm would be about social media in breast cancer. This is particularly true if patients are looking for a hashtag e.g. #cancer. Maybe is should be based on some of the medical abbreviations, e.g. BrCa or mCRC. They could each have added hashtags e.g. BrCasm or mCRCsm. My thoughts.
Matthew Katz
Jim, thank you for taking time to comment. I think it is imperfect but has some reasons behind it. When I first wrote up the idea in July, the idea had been:
“The use of hashtags…can be effective in health care if:
1. It is disease-based;
2. It helps patients with similar diagnoses learn and share rather than be isolated by the cancer experience;
3. It is designed to make information more easily accessible;
4. It is unique enough to be distinguished from other topics online;
5. Brevity is key to allow more content/conversation, especially with Twitter.
The thought had been to build upon the success of #hcsm and #bcsm for uniqueness and brevity that would make others recognizable. Adding -sm helps with these criteria, and it acts as an overt reminder that the information is being shared in a public space — it isn’t medical advice, or a structured therapeutic enviroment but a way to ‘narrowcast’ health information and ideas.
For #hpm, if the tag is working then no need to adopt the -sm. If there are others using it for other topics/meanings, then adding -sm may improve the signal/noise ratio, though at the cost of looking a little funny and taking two more characters away from sharing content. But the goal isn’t to impose order but to suggest structure.
It has evolved after that post to allow for theme/experiential/procedure based topics. It may evolve more. I’ve discussed online and off even more specific hashtags but it may require further buy-in. Any suggestions you have for bringing hospice and palliative medicine, or other areas of oncology, into a coherent system are welcomed.
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