May 2013 – Alison Pearce

Imagine a newspaper where you get to choose the sections to include (front page, finance, politics, entertainment, sport etc), and also who writes the articles in each section… Welcome to twitter…

Is twitter a social media fad for tween girls to share their love of Justin Bieber, or is it a social media tool that can no longer be ignored? Twitter is now used by health officials to track disease outbreaks, and monitored for security threats in the US. Worldwide, 21% of internet users actively use twitter each month, and over 55’s are the fastest growing demographic on twitter. So how can academics use it to promote themselves and their research?

First of all, what is twitter? You create a profile of who you are, and then you ‘follow’ people to see what they say. By following people who tweet about topics you’re interested in you get a twitter feed filled with information, links, news and updates tailored for you.

For 50% of twitter users, this is all they do. But to get the most out of twitter, you need to interact. You can retweet things you find interesting, as well as creating your own tweets. Tweets can be about things you hear at conferences, get by email or simply your own thoughts (see hints below on writing good tweets). You now have a global network of people who are interested in the same things you are.

For example, my profile says I’m a health economics PhD student examining costs of cancer care. I follow organisations like ISPORorg, CHEyork, simplystats, Healtheconall and NCImedia, and people who tweet about health economics, writing and being a PhD student, like Inger Mewburn (thesiswhisperer), James Hayton (3monththesis) and Arthur Phillips (MPH_adapt).

So why are many academics nervous about getting involved in twitter? It seems to me to be a combination of misconceptions about the benefits available, and a fear of losing control.

Much of the public perception of twitter is that it is photos of what people ate for breakfast and the inane thoughts of music superstars. But I conceptualise twitter as my personal newspaper. I choose if I want to include a food section or an entertainment section in my health economics newspaper. And if I do want some of these sections, I chose how big they are and who writes the stories that get published. In addition, twitter also allows me to publish news that forms the content of other people’s newspapers. And it is this aspect that can get my name, and my research, known internationally.

The perception that academics will lose control of their content is an interesting one. Some are worried that unpublished work, such as that presented at conferences, should not be tweeted. But a conference is a public event, so a presenter wouldn’t present their work if they didn’t want it heard. My perspective is that while you do potentially lose some control of who hears your message and when and where and how, the benefits of having your work seen by a potentially much larger, more diverse audience than would be in a conference session far outweighs these potential downsides.

Tips for using twitter to promote your research

Use your real name
Tweet a 70:30 mixture of professional and general interest/personal information
Use hashtags when you tweet , and to find people to follow
Be active and engaged, but remember that you don’t have to be ‘on’ all the time
Everything you tweet is public and forever
Don’t use all 140 characters (to allow others to retweet)
Follow the conventions for acknowledging sources of your information
If something is said in public, it can be tweeted. But it might sometimes be nice to ask permission first (or let people know you’re ok with it if it is you presenting).
For an excellent guide to getting started with Twitter, check out the Mashable guidebook

The most re-tweeted image of all time (817,000 retweets & 300,000 favourites)

Four more years. twitter.com/BarackObama/st…

— Barack Obama (@BarackObama) November 7, 2012

Having just moved from Australia to Ireland to do a post-doc at the National Cancer Registry, I was interested in comparing the Australian and Irish cancer registration systems. Both countries have excellent cancer registries, with some similarities as well as differences between them. A table comparing the features of each system is below, but the primary differences are around the method of collecting data for the registry, and the amount of information captured.

In Ireland the Department of Health and Children has funded the National Cancer Registry Ireland since 1994. Cancer registration is not mandatory. However, data capture is close to complete through a system of active data collection through trained registry employees being stationed at hospitals around the country to collect cancer cases and data. Most new registrations are identified through the pathology report, however public hospitals also produce lists of cancer cases discharged each year, and death notices are checked as well. Six to twelve months after a new cancer notification, the tumour registration officer pulls the medical record for each notification, and completes the data entry. Information is collected on the individual, the cancer and their initial treatments, with the full data list provided in the registry manual (p9) here. Cancers are registered at the level of the individual, but are analysed at the tumour level.

In Australia, each state has an independent cancer registry, which reports a standardised minimum dataset to the National Cancer Statistics Clearinghouse at the Australian Institute for Health and Welfare (AIHW). The New South Wales (NSW) registry, managed by the Cancer Institute NSW, is described here as an example. Throughout Australia reporting of cancers (other than basal and squamous cell carcinomas of the skin) is mandatory, and whenever a hospital, pathology lab or radiotherapy centre deals with someone with cancer they are required by law to notify the cancer registry. Basic demographic, cancer and doctor information is obtained and supplemented with pathology reports and death certificates; however this is less extensive than in the Irish system. Cancers are registered at the tumour level.

Both registries produce very similar statistics such as incidence, prevalence and mortality rates, as well as specialised publications for topic areas of specific interest to the country. Data is made available by both registries to the government and other researchers, following appropriate ethical review and de-identification.

Table 1: Features of the Irish and Australian cancer registries compared

Feature	National Cancer Registry (NCR) Ireland	New South Wales (NSW) Central Cancer Registry	Australia Association of Cancer Registries (AACR)
Funding	Department of Health and Children	NSW Health through Cancer Institute NSW	Department of Health
Established	1994	1991. Dataset dates back to 1972	1982
Direction provided by	National Cancer Registry Board	Cancer Information and Registries Advisory Committee within Cancer Institute NSW	The AACR Executive Committee advises the AIHW on the direction of the National Cancer Statistics Clearinghouse (NCSCH) work program and the development of publication topics and strategies, and provides technical advice on the operation of the NCSCH.
Functions	to identify, collect, classify, record, store and analyse information relating to the incidence and prevalence of cancer and related tumours in Ireland to collect, classify, record and store information in relation to each newly diagnosed individual cancer patient and in relation to each tumour which occurs to promote and facilitate the use of the data thus collected in approved research and in the planning and management of services; to publish an annual report based on the activities of the Registry; to furnish advice, information and assistance in relation to any aspect of such service to the Minister.	act as a population based register of all cancers in NSW residents monitor and undertake surveillance of new cases of cancer, survival and deaths in NSW supply timely and accurate data based on a total record of all cases diagnosed in residents of NSW	analyse and report on the data in its national repository of cancer incidence and mortality statistics; support research based on these data; and develop and improve cancer statistics generally.
How are cancers registered	The reporting of cancer is not mandatory, however the NCR uses active ascertainment and follow up to ensure that there is accurate and complete recording of all cases diagnosed. Tumour Registration Officers employed by the registry are based at hospitals nationally. The main source of notification of new cases is a pathology report, however each public hospital provides a list of people discharge with cancer which is checked against the registry, as well as checking death notices and receiving notifications from registries in the UK.	All Australian states and territories have legislation that makes the reporting of all cancers (other than basal and squamous cell carcinomas of the skin) mandatory. State and territory population-based cancer registries receive information on cancer diagnoses from a variety of sources such as hospitals, pathology laboratories, radiotherapy centres and registries of births, deaths and marriages. When any of these institutions deal with someone with cancer, they are required by law to notify the cancer registries.	The cancer registry in each state or territory sends information to the National Cancer Statistics Clearing House at the AIHW to compile into a national database of cancer incidence, the Australian Cancer Database.Cancer data are also made available to the World Health Organization, state and local government authorities, health care institutions, health professionals and medical researchers.
What information is collected	The medical records are retrieved 6 – 12 months after notification to complete case information and capture relevant treatment information. Validation checks are performed at the point of entry and internal verifications are carried out monthly. See page 9 of the manual (www.ncri.ie/ncri/foifiles/Manual.doc) for details of data collected.	The CCR records new cancer cases and does not capture cancer recurrence.demographic information, brief medical details describing the cancer and a record of at least one episode of care. The data are supplemented by pathology reports and death certificates.	name and address sex date and country of birth Aboriginal or Torres Strait Islander descent clinical details about the cancer the notifying institution and doctor
Definition of a cancer	Cancers are registered at the level of the individual, but are analysed at the level of the cancer. Metastasise are associated with the primary tumour and not considered separate cancers.	A case of cancer is the occurrence of a primary malignant neoplasm in one organ of a particular person. Therefore a case of malignant melanoma in an individual counts as one case. If the same person then develops leukemia, this counts as a second case.