We call “the crowd” to help define a definition of Health 2.0.

After our systematic review about the definition of Health 2.0, one of our next steps will be sorting out what “the crowd” thinks that has to be part of a definition of Health 2.0. For this purpose we’ve set up a little questionnaire that you could fill in below.

To make the crowd as big a s possible, we have also made it available to put on your own blog or website. We would encourage you to do this and inspire others to do the same. To do just that copy & past the html code below in the first comment on this blogpost, into your website or blog. Because Posterous translates HTML code nicely and automatic in a great page, i had to put it in a commentfield ūüėȬ†

The results will be published in a peer-reviewed article. 

Young Cancer Patients develop online-community, University Medical Centre facillitates

Radboud University Nijmegen Medical Centre (RUNMC) facilitates, young people with cancer to develop their own community.

Update 1 : Forrester Research wrote a great case study on this work of us : Case Study 
Update 2 : watch the TEDxMaastricht talk of Lucien Engelen at the end of this blogpost that is refering to AYA4 and it’s Ambasaador Jip Keyzer who sadly passed away on February 28th, 2012.
Update 3 :Forrester did another report where in the AYA4 community has been reported together with examples of  Aetna, Blue Shield of California, Regence, and The Cleveland Clinic

Radboud University Nijmegen Medical Centre starts with the development of AYA4 (All information You’ve Asked For) :  a unique online community for and by young people with cancer. The University hospital facilitates the technique, support and innovation, but it is the patients themselves who determine the content of the community and start filling. They create themselves a digital place where young people with cancer and their families can meet, exchange essential information, ask questions and share knowledge and feeling.

Youth and young adults with cancer (18 -35 years) often fall between two stools. They’re too old for child care and regular oncological oncological care often does not answer questions specifically with this group is, questions in the field of study, relationships, work, independent living and having children. 

 Internationally, the group called AYA: Adolescent and Young Adults.In this vein, the RUNMC in 2009 launched an AYA platform. Part of this platform in April 2009 opened a special hangout for young people with cancer and outpatient digital clinic AYA (autumn 2009). Among young people and their families show a great need for accessible in touch with peers and discuss key issues for them, besides the medical content items. Therefore facilitates RUNMC them to develop AYA4: an online community within the AYA platform. Prof. Winette van der Graaf, medical oncologist and initiator of the AYA platform: “In the strength of your life affected by a malignant disease has a major impact on the here and now, but also your future dreams. You will often be different in life, and your environment can not always go along. Oncology treatment team if we want to provide care extending beyond the hospital walls. Concern that also can be offered as the phase of active treatment is over.Therefore, we eagerly forward to AYA4, because we believe that AYA patients know best what they need and when. “

Matchmaking
The aim is to provide people with the same kind of questions, problems and interests with each other to make contact within the community. In this context, the technical assistance of a big dating service is called in (by the Radboud REshape Healthcare Centre)  Not to create new relationships, but to use the technology people and interests together to match. In AYA4 each participant is to decide whether and on what subjects he / she wants to maintain contact with peers. This could be very practical things like food, insurance, money, but also personal issues such as fertility, relationships, death and life questions. Jip Keijzer (25 years and under treatment for bone cancer) is one of the patients also develop AYA4: “To me, AYA4 hopefully an opportunity to share my story in hopes that another aid or inspiration from it can get. I am glad that extra attention is given to cancer patients of my age.It is pleasant to others in the same age group to meet during my process of chemotherapy.Older people are often different to their cancer. “

Radboud reshape Healthcare
The development of AYA4 is in line with the vision of the Radboud University Centre for Oncology (RUCO), where the patient and his surroundings are part of the (treatment) team and is one of the spearheads of RUNMC to deliver innovative care in this case by the Radboud REshape Healthcare Centre. This team deals with the translation of Health 2.0 idea’s into real products of Participatory Healhcare. Lucien Engelen, Health 2.0 ambassador of RUNMC and in charge of this team: Within our vision of health 2.0 we would like the patient to be on our team, we want to develop innovative products with them, close to their contact information and knowledge needs. The patients themselves know better than anyone what is important to them, théy are the experts in háving the disease. If we are going to ask what they really want, we sometimes miss on 180 degrees in the wrong heading of what we thought. AYA4 is a wonderful example of the inclusion in the team.” Therefore it isn’t ús building a community, we facilitate a process and environment. The targetgroup itself is responsible for the content and we support them in all areas. We look with confidence and curiosity about the outcome. “

AYA4 will initially be developed by young people in treatment in the Radboud University Nijmegen Medical Centre. Besides patients, including parents, partners and other relatives participate in the community. They too have their own issues and needs surrounding contact the disease process or later. Striving for the community in the coming months full shape, and formally launched at a special conference this fall.

 

Dancing in tha’ Street

And now something completely different, sometimes you’ve got to show you’re fatherly pride ;-). ¬†

Our daughter (@melindaengelen) made it with her team through the Dutch Open Championship up until the third place. Great huh !

So now they’ve qualified for the World Championship¬†2010 in Blackpool (UK), ¬†organized by¬†United Dance Organisation¬†August 28th.

They want to raise as many money themselves, so they don’t have to ask their parents a lot of money, NICE ;-)))

So Melinda (the girl in the right pointing to their award) asked me if i could help them with making a little video-clip and lend some other hands.

Melting for her charms (as always) we’ve made a Dutch Website and a video clip for her team Un-Restricted aswell as for the team of her danceschool-teacher and owner of School of Dance The Big Experience¬†named N-sanity.

This team also qualified for a chance to show up in the movie Step-Up 3D, so may be you give them a little help and vote for the last video. (the one with the team in the blue lights)

So, have a look at the Teaser video i’ve made for both of the teams : (exit father-mode ūüėČ

 

And also we’ve made a clip of this whole dance-act.(one of the many they’ve got).

 

Silence

A day like this makes you grateful of what you got and who you are. Also it makes you makes you realize how grateful you should to be able to live in good health.

The day started with the announcement of @mautje1975 and her husband @vanmaanen who lost their dear friend Dion this night. 

Next i received a lovely tender mail of @ragnaja about how things are, who suffered a stroke some weeks ago.

And in one and a half hour (14:00 CEST) @ontmaagding will stop living this world, because of cancer. (see his blog in a Google translation )

And this is only in my little network on twitter.

Days like this makes you silent, REthinking the things you do, and be lucky, live the days and help others. We only have little time, in this life, on this place.

 

Patients improve healthcare by setting up guidelines themselves

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This is a Google Translation of this page

Starting this month, patients themselves how a guideline for health care providers should look like. Freya, the patient for couples with fertility problems, and the UMC St Radboud have jointly developed a website (press here for Google translation of website)with recommendations for proper care for these couples. Patients can self new recommendations to add or change existing recommendations. They can also assign a score to the recommendations.The recommendations that patients consider most important are new and used directly for updating guidelines. 
The developed system is also useful guidelines for other areas of concern.

Thousands

For the treatment of virtually all medical problems are guidelines and protocols. There are now thousands. They are developed and managed by national and international health organizations, medical associations and umbrella organizations. The direct involvement of this patient has so far been minimal. There is now changed. Members of patient Freya, together with fertility experts from the UMC St Radboud developed a method for making recommendations for patient guidelines. These are for the entire network of professionals involved in fertility issues involved. So, not only for IVF doctors or gynecologists, but also for general practitioners, urologists, psychologists and educators. The recommendations thus have been established, can be found on a website www.freyawiki.nl , which launched this month.

Patients at the helm.

Patients themselves at the helm in developing the new website. They design and functions put forward. The website is divided into seven phases of care: general care, physician, obstetrician / fertility doctor, urologist, laboratory, and other emotional support. 

Patients with fertility problems in different care stages add recommendations and indicate how important they find the recommendations. Per care phase, the five recommendations the highest score, will become part of the guidelines. Guidelines remain current and ongoing security of patient participation is guaranteed. 
The development of the website is made possible by a grant from ZonMw.