A fresh start: the story of why I deleted all my tweets

November 17th, 2009 • Moi Numérique, Moi-Je par soi-même • 2 comments

This is another contribution to the digital identities case stories repository, in the Pattern Language Network. Case Stories describe critical incidents of practice, highlighting key design challenges and possible solutions, They can be found at: http://purl.org/planet/Cases/

Situation

What was the setting in which this case study occurred?

Recently I have applied for selected job positions within international organisations in Europe. As soon as I had finished preparing and submitting my CV, I started to assess my online presence in case a potential employer ‘Googled’ me. I did not have any issues with my blog or my Netvibes universe: although they can always be improved, for example, making easier the access to relevant and structured information, they are in fact always prepared for public scrutiny! However I had a nagging thought in the back of my mind about my Twitter account.

Task

What was the problem to be solved, or the intended effect?

Although I was reluctant to use Twitter, I fell into it in 2007. At the beginning I used it only for personal purposes, but I soon began to tweet about my professional activities as well, mixing personal and professional tweets as my life went on. I was wary of privacy issues and always paid attention to what I tweeted. However, I did not want to build a fake public persona by carefully selecting tweets and retweets according to the editorial line ‘what am I doing now that makes me look great’? (replace ‘great’ by any other self-aggrandisement adjective).

So I have happily tweeted as a professional, but also as a mother and a citizen about all sorts of things that fill my everyday life – when life was clement enough to leave me the time to do so.

A few weeks ago some events made me reconsider my twitter activities:

• a blog post on the Internet titled “Is twitter my new CV?”

• the proliferation of fake public personas within the EdTech panorama who are effectively using their Twitter accounts as an eReputation trampoline

I realised that my Twitter account is definitely not my online CV in action and I did not want it to be. I am not building myself as a professional using Twitter. And I don’t want people to build my online professional profile based on my Twitter stream.

With this idea in mind I reassessed my Twitter stream and found a portrait of myself that wasn’t uplifting for my professional self: a mother busy living a challenging life.

Actions

What was done to fulfil the task?

I didn’t want to delete my Twitter account, I just needed a fresh start. As a consequence I decided to delete just the Twitter stream and decide later whether I was interested in continuing to twitter or not. I deleted all tweets using TwitWipe, a tool that deletes all your tweets in one go: http://twitwipe.aalaap.com/login.php. When my Twitter stream was deleted I tweeted an explanatory message announcing that all 573 tweets had been wiped.

Results

What happened? Was is a success? What contributed to the outcomes?

Deleting all my tweets feels like a success. I instantly felt weightless, without worries about the kind of professional profile that people can build by backward screening my Twitter account. However, given that the number of tweets in a profile are an identity marker, I would have loved to keep this indicator. I don’t want people to think that I’ve just discovered Twitter!

Since I deleted all my tweets I also feel less pressure to use Twitter. I have only one tweet explaining that I have erased everything else, I don’t have to twit anymore as well. I can escape from the banal world of ‘Hello Twitterverse!’ I do not even open my iPhone Twitter app. My life has changed: I have more time to concentrate in important things and be productive. I can always blog!

Lessons Learned

What did you learn from the experience?

I gained a better appraisal and management of the so-called spontaneous and ephemeral online activities.

CV Builder plugin for Wordpress: a interoperability scenario

September 16th, 2009 • Moi Numérique • No comments

Here a diagram of the interoperability scenario for the CV builder plugin for WordPress developed in the field of The Rhizome Project.

Using the plugin to create CVs is a simple 3 steps process: create a Master CV, customise Views and Export them!

1. Once plugged to WordPress, the user can store his data in a single XML file that acts as a vault for personal and professional information: this is the Master CV. The user can create one storage file or Master CV per language, in all official languages of the European Union.
2. With the data contained in the Master CV, the user can create as many customised Views he needs. At least three structured formats are provided: short profile, Europass CV and HR-XML. The user can also take advantage of customisation functionalities in terms of display of information and integration on media to create free form CVs.
3. For each View, a range of Export possibilities exist: ODT, PDF, HTML, XHTML and XML. Online publishing can also be password protected.

Images of superior sternal cleft in a 4 years old

September 16th, 2009 • Pourquoi ça n'arrive qu'à moi? • No comments

Here two images from a recent thorax scan of my daughter before surgical intervention.

Design principles for the custom CV Builder plugin for WordPress compliant with Europass and HR-XML specifications

August 6th, 2009 • Moi Numérique, Portfolio et ePortfolio • No comments

The development programme for the custom CV builder plugin follows 10 design principles: user-centric, interoperable, recognised, flexible, multi-lingual, multimedia, secure, portable, accessible and open, all described in detail here:

1. User-centric. The CV builder employs a user-centric approach to personal data management by allowing individuals to control their personal information and digital self-representation. Individuals can decide where to store their data and have administrator rights to manage it. In this way data is not held with third-party web CV repositories or Job Board administered applications. The Europass CV Builder is fully integrated with WordPress, as a plugin application.
2. Interoperable. CVs are compliant with the latest HR-XML Staffing Exchange Protocol specification. By using a standards compliant CV format, individuals are able to establish a fluid exchange of personal information with eRecruitment, eLearning and Human Resources bodies.
3. Recognised. The builder produces CVs that comply with the widest European and internationally recognised standards for representation of personal data, qualifications and competencies. This allows the edition of a complete CV following the official Europass template and latest Europass XML specifications, recognised by audiences not limited by sector or geography.
4. Flexible. The CV Builder can produce flexible and fully modifiable views of CV content. Individuals can customise their CVs and target them according to their personal or professional needs and goals. To create a targeted CV, the user selects relevant content from the Master CV (the vault for personal information) and creates a View. This can be built using out-of the box templates or by creating new templates that can be customised with the addition of extra sections and fields as required. These fields may be outside of the Europass template but present in the HR-XML specification and therefore HR-XML compatibility is maintained. Allowing user-created fields will break standards compliance but this option is being considered to enhance customisability.
5. Multi-lingual. The entire interface is multilingual and content can be filled in by the user in any of the official languages of the European Union.
6. Multimedia. Text fields within the CV can be linked to any media (pictures, certificate, video or audio record); these can be added as evidence of performance alongside the tagging and aggregation of content from distributed locations. Support for WordPress ‘short codes’ allows content integration within blog posts and pages, adding ePortfolio-like capabilities.
7. Portable. Individual CVs are accessible via Internet and can be packaged, exported and moved from physical locations e.g. hosting services compliant with HR-XML specifications.  Users can also select the publishing format of their choice for each targeted CV or View, including: XHTML and HTML (integrated in blog pages), PDF, ODT, HR-XML feed and Europass XML feed.
8. Accessible. CVs are ergonomic, usable and any user, through compliance with accessibility standards such as WAI, can readily access content.
9. Secure. Stored personal data and CVs are secured for personal access via the WordPress authentication protocol. Individuals can set access permissions and the builder is granular enough such that portions personal data can be cordoned off. Publishing rights are available to allow both public versions of a CV for open consultation via the Internet and protected CVs held in a secure location. Each export of a targeted CV or View can be protected by an access code defined by the user.
10. Open. The CV is open and not related to any proprietary technology. Its online forms are built using XForms.

If you want to comment this entry, please go to the Rhizome project blog at: Design principles for the custom CV Builder plugin for WordPress compliant with Europass and HR-XML specifications

Resurfacing the KITE Europass-CV plug-in for WordPress

August 6th, 2009 • Moi Numérique, Portfolio et ePortfolio • No comments

As part of work being undertaken by the Rhizome project, we plan to enhance the range of existing standalone and plugin CV builders by developing a custom CV creation plugin for the blogging tool WordPress. This will allow individuals to maintain and present views of their professional profile, skills and competences.

Our plugin lies at the crossroads between self-presentation devices like the résumé, profiles maintained on professional social networks such as LinkedIn, and an ePortfolio style systems.

It will allow users to store their online personal data in a secure location of their choice and facilitate individuals in not only presenting their competencies according to the Europass CV format, but also in interoperable formats such as HR-XML and Hresume. Information in the CV builder, for example present educational and professional achievements, can be used to exchange data with educational providers for validation and accreditation purposes as well as enable reflective learning practices, and to store and present  educational and professional achievements.

The Rhizome project will not be developing a solution from scratch. We will be extending an existing open source solution released under GPL in 2007 – the KITE Europass-CV plugin – that was produced within the framework of the KITE project, co-funded by the European Union.

KITE offered an implementation of the Europass-CV as a plugin for three major open source blogs: Wordpress, DotClear and ELGG, and allowed users to present their competences and qualifications in full compliance with the specifications under the HR-XML Staffing Exchange Protocol 2.4

The work was started under the KITE project left some deficiencies in terms of usability, in two major areas: the orientation features of the graphical interface and the architectural organisation of the navigation paths through the system.

What the KITE plugin did offer was a major advance in CV building with the ability to create CVs for all official European languages, compliance with HR-XML specifications, the first match between Europass and HR-XML SEP. Separation between content and presentation was achieved using a Master CV that represented a ‘vault’ for all personal information. Data could then be selected and displayed from the vault according to user customisable preferences – these views being exportable in multiple formats such as XHTML, HTML, ODT, PDF, RTF and be held in public and password-secured locations.

Apart from the technical merits of the KITE project, we decided to resurface the plugin as a solution to the problem of implementing a user-centred approach to personal data management that would allow dynamic exchanges of personal information with eRecruitment, eLearning and Human Resources bodies. We identify a number of trends and factors that have suggested this as a valuable approach, including the:

• Increased use of blogs as self-representational devices, and significant uptake in their use across formal and informal educational settings;

• Development of blogging architectures that support plugin and widget functionality that can facilitate data exchange and aggregation of information whilst allowing for flexible presentation;

• Use of the CV as the backbone for identity management systems, personal representation tools e.g. portfolios, ePortfolios, blogfolios, personal aggregators and mashup technologies, and certain social and professional network sites like LinkedIn;

• Uptake of HR-XML as the open standard specification in electronic exchanges related to eRecuitment, eLearning and Human Resources;

• Deployment of European Community Frameworks and tools for the transparency of qualifications and competences, example include ECTS, ECVET and Europass.

Here is an overview of the six ways the Rhizome project is planning to enhance the KITE plugin:

1. Update the application profile for compliance with the latest HR-XML SEP specifications and the new Europass XML specifications;
2. Redesign the look and feel of the user interface and adopt WordPress content organisation and navigation styles;
3. Extend the options for customisation so that users can create views by re-ordering and adding new sections, categories and content. This will allow variation in the model for (re)presenting personal information and allow for ad-hoc profiles that can be used for ego-branding and interactions with professional social networks;
4. Incorporate simple mashup capabilities to allow the aggregation of personal information and distributed web-based content under the competency descriptors;
5. Add support for WordPress ‘shortcodes’ so that CV content can be extracted to pages and blogposts and be used as material for cross-referencing competences and as evidence of performance;
6. Allow widgetisation of the CV for ego-branding purposes.

Steven and I will be blogging here and in the Rhizome blog about the new plugin design principles and key features, as well as the interoperability scenario, the use cases and its detailed functionalities. If comments please leave them in the Rhizome blog at: Resurfacing the KITE Europass-CV plug-in for WordPress

Une qui part, deux qui restent

June 25th, 2009 • Au fil des rencontres • 1 comment

Un moment volé à la séance photo organisée avec Charles de Borggraef . Un moment qui n’est pas près de se répéter.

On the benefits of Open Access to medical research about rare diseases

May 6th, 2009 • General • No comments

Yesterday, Peter Suber wrote  in the Open Access blog: ‘OA to medical research helps patient families, not just professionals. It’s impossible to argue that OA to peer-reviewed research doesn’t help lay readers’.

I’ve never taken part in the debate about Open Access to scientific knowledge. But I believe that OA is a right for all citizens worldwide. Naturally, the benefits of OA for scientists, scholars, teachers and students are irrefutable. However, there is an ongoing polemic about the benefits of OA for the ‘curious minds’, the general public, just the lay readers. See OA news on OA for lay readers.

In my opinion, access to scientific knowledge is not only a matter of access to peer-reviewed articles in a online research journal. As an educator, I see, among many issues, some related the vulgarisation of scientific knowledge by the researchers themselves. I just think about blogging about research findings or even introducing a section, sort of summary, that completes the abstract of all research articles and that targets the general public so it can be easily and widespread reproduced. Also, from the lay readers’ side, the required literacy for OA: use of centralised OA research engines, selection and classification of sources, use of references… Naturally, the ability to understand  abtracts, (discussions) and conclusions will vary among individuals and depends on each individual’s education.

Many has been said about the reasons for lay readers to access scientific knowledge. I want here to give my personal reasons. Open Access to medical research about rare diseases is a fundamental right for all citizens worldwide. It is outrageous that still in 2009, patients and patients’ families, and specially those who suffer from a rare disease cannot access all medical research online and for free.

In my case, I will not understand it all. I will not become suddenly, by reading a research article, an expert of the area and solve my daughter’s problem, transforms myself in a doctor or a surgeon, but by accessing OA medical research I certainly can:

• Identify national and international experts, including research units, laboratories and health care centres that I can contact,
• Have a rough idea of the state of the art, including:
  • the range of materials, methods of interventions and treatments, including recommended operative techniques,
  • the innovations in the field,
  • better understanding of the results and complications, including mortality rate and psychological effects,
• Increased awareness of reputation and expertise of doctors I may contact, but also a better assessment of the treatments suggested by the doctors I’m in contact with.

While writing this, three provocative thoughts come to my mind:

• Can lay readers assess quality?
• Do doctors want patients to be informed?
• By giving to lay readers, in these case patients and theirs families, OA to medical research are we changing traditional power structures related ownership of knowledge and shifting locus of control from doctors to patients?

I feel in the mood to go further and say that even commercial academic publishers should guarantee OA to medical research for patient and families with a disease, rare or not. It is vital for us and it is also a public good.

I finish by quoting the first paragraph of the Budapest Open Access Initiative

An old tradition and a new technology have converged to make possible an unprecedented public good. The old tradition is the willingness of scientists and scholars to publish the fruits of their research in scholarly journals without payment, for the sake of inquiry and knowledge. The new technology is the internet. The public good they make possible is the world-wide electronic distribution of the peer-reviewed journal literature and completely free and unrestricted access to it by all scientists, scholars, teachers, students, and other curious minds. Removing access barriers to this literature will accelerate research, enrich education, share the learning of the rich with the poor and the poor with the rich, make this literature as useful as it can be, and lay the foundation for uniting humanity in a common intellectual conversation and quest for knowledge.

Asymptomatic sternal cleft: is the repair necessary only for aesthetical reasons?

May 5th, 2009 • General • 1 comment

Contrary to what I’ve been told so far, that in the case of asymptomatic sternal clefts, a surgical intervention was recommended only for aesthetical reasons, I’ve found two articles on sternal cleft surgery stating that sternal clefts should be corrected and giving a series of indications beyond aesthetics.

These articles also outline the importance of addressing base by case, as sternal clefts, with r without ectopia cordis, represent a rare clinical entity:

and also, more detailed:

When I read this, two indications worry me “Enlargement of the defect over time will worsen in appearance and make it more difficult to correct” and also “paradoxic respiratory movements of the chest induce dyspnea and presispose patients to recurrent respiratory infections”.

I wonder then, why the doctors affirmed that leaving unrepaired Priel’s sternal cleft would not have any consequence in her future development.

Dr Alexander Fokin is the author of the first fragment cited here that comes from Alexander A. Fokin and Francis Robicsek, Management of chest wall deformities in Advanced therapy in thoracic surgery, Kenneth L. Franco, Joe Billy Putnam, Robert S. D. Higgins, J Sanchez, PMPH-USA, 2005, 548 pp. He is also cited as main reference for his classification of indications for sternal cleft repair in: Michael J. Sundine, Treatment of sternal clefts in Reconstructive Surgery of the Chest, Abdomen, and Pelvis, Gregory R. D. Evans, Informa Health Care, 2004, 473 pp.

Access to scientific information and support about sternal cleft: comparison of three sources

May 3rd, 2009 • General • No comments

As explained in Sternal cleft: repair or not repair? Mother’s questions to a scientist, I’m presently looking for scientific information and support to make an informed decision about the surgical intervention for aesthetical reasons of my 3 years old, Priel.

I’ve launched in parallel 4  methods for doing so:

• I’ve written, as I did almost 4 years ago, a post in English with a list of questions and a invitation for testimonies of parents and patients about their experience of (upper) sternal cleft. I have also, after reflection, posted two public photos of Priel. The majority of photos found online of upper sternal cleft come from medical archives and are not pleasant to see. In Priel’s case the cleft is very mild, it does look strange and every person who meet her remark either the gap on her chest or the way the air fills this gap when she breathes, but specially when she laughs or worse, cries.
• I’ve twittered about it, 3 persons retwitted  and I received an concrete answer offering help from a doctor in Oregon:

• I’ve reposted my blog post in TwitterMoms: http://www.twittermoms.com/forum/topics/sternal-cleft-repair-or-not
• I’ve used the traditional search for information method via the Directory of Open Access Journals and the Custom Google Search in the Open Science Directory. The first, gave me 4 links to medical articles. The second, more than 100 links to medical articles, the majority of them in closed databases. Each single article will cost $25-$40.  Cannot agree more with Open access and the price of knowledge. I still have to review these articles and cross fingers to find a literature review of upper or superior sternal cleft in a Open Access Journal. Dreams costs nothing!

These efforts will be completed by a post in French with questions addressed to the persons who contacted me during the last 3 years: two parents of toddlers with sternal cleft and a young woman whose sternal cleft was repaired in 1987. Let’s see which methods give the best results: self-search vs personal network?

Update 5 Mai 2009:

• No answer to my post in ‘the influential moms network’ Twitter Moms.
• Two persons retwitted: @NergizK and @Cristinacost, women and not of the egotwistical kind
• One doctor contacted me via Twitter and asked me for complementary information in a direct message
• I’ve surfed all the sources that came up using the Custom Google Search in the Open Science Directory: none is free access. However I found two excellent books of chest wall repair which text is partially accessible via Google Books.
• I’ve found two articles in free access via the Directory of Open Access Journals. I still have to read them.
• After preliminary readings on the subject, I contacted by mail Dr Alexander Fokin, who seems to be a worldwide expert in sternal cleft deformities and their repair, with my previous list of questions.

Sternal cleft: repair or not repair? Mother’s questions to a scientist

May 3rd, 2009 • Pourquoi ça n'arrive qu'à moi? • 5 comments

4 years ago, few hours after her birth, I discovered that my daughter had a sternal cleft of the upper third of the sternum*. I’ve collected all possible sources accessible to the general public and prepared an information sheet for parents like me, asking for questions not answered by their doctors: Quand une maladie rare frappe à notre porte .

At the time, the references in the articles put me on the trail of Professor Padovani, now retired surgeon of the Hopital des Enfants Malades, Necker in Paris, see Sternal cleft: Case report and review of a series of nine patients. I’ve seen him once in 2005, for 10 minutes, along with Professor Glorion who is the chief of the orthopaedic surgery and paediatric traumatology unit. It was like seeing the president – very short and straight to the point – no time to waste here.

I’ve been there three times:

• October 2005: Sternum may grow during the first years of life. Let’s see her sternum development in one year.
• November 2006: Sternum is growing slowly. Let’s see her sternum development in two years.
• May 2009: her sternal cleft is still visible, but is not one unpleasant to see. Could be worse, couldn’t it? The choices are between letting her grow up adult with a gap in her upper chest, a gap that fills with air like a frog or a bird, when she cries or laughs. Or going for a sternal cleft repair, by approximating the U-shaped sternal defect, that leaves a vertical scar. It needs to be done soon, this autumn, while her bony thorax is still compliant.

Today I feel as if everything were starting again. Alone with no answers, not knowing what decision to take. With no time to ask all the questions I wanted. Feeling like disturbing the big scientist who gave me enough time already. Many other children are waiting in the corridor to see the Professor. I have to leave.

Today I’m upset. I don’t have elements to make an informed choice. From what I understood, approximating the U-shaped sternal defect is something like opening the chest vertically, sewing bones together, and closing the chest. But nothing of this was explained properly to me. I guess because a lack of time or because I’m parent, not a doctor. This is not parents’ business. Doctors decide what to do and we, patients, have the freedom of accepting or not. But no one sits near to you and explains the state of the art in the field, reviews the variety, if any, of surgical methods for sternal cleft repair, and gives advice.

The uncomfortable position I find myself in is one of deciding a surgical intervention for aesthetic reasons on my daughter. After all, is her body, not mine. Why do I have to decide how she will prefer to live? Would she prefer to live with the defect or with a persistent scar? Will she always hide her neck, wearing longs necks and collars? How will she feel, with her naked body, when making love for the first time? These are not doctor’s matters.

If you as a scientist, drop by this post, please help the mother and explain me:

• What are the different methods for sternal cleft repair?
• Are there alternative methods that do not leave a vertical scar across neck and chest, but a horizontal scar?
• Is there any method of intervention at a later age that will allow her to participate in the decision making process?
• If this is the only method to repair, when her bones are sewn together, will the thoracic cage have the same amplitude?
• Does it hurt and how long after the intervention patients suffer?
• How long it takes to fully recover and not to be in pain?
• Will she be able to move her shoulders back fully? Will she be able to play sports?
• Are there photos that I can see of the results an intervention like this?
• Are there any testimonies of other patients on the quality of life with a sternal cleft and with a repaired sternal cleft?

*Sternal cleft is a rare congenital anomaly resulting from a fusion failure of the sternum

In the following photo from the case report Primary repair of a sternal cleft in an infant with autogenous tissues , by Sinasi Yavuzera and Murat Kara, we can appreciate a young girl before and after the intervention: