Local Paediatric Diabetes Practitioners Using a Web 2.0 Patient Portal
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Abstract
Background:
Management of paediatric diabetes type 1, including frequent insulin injections and intensive self-control of blood glucose, is part of everyday life. The treatment is performed by young patients themselves, along with their guardians, over time becoming their own experts.
Through the varying phases of the disease trajectory they are guided by paediatric diabetes teams, consisting of nurses and nurse specialists, physicians, dieticians, social workers and/or clinical psychologists. The practitioners meet young patients, along with their guardians, when hospitalized at onset, and continue to see them quarterly or more often as outpatients over many years.
Regular appointments in the clinic and telephone contact when needed remain the traditional means of communication. Electronic communication systems have been available but uptake is slow. Local websites of healthcare providers typically may include basic information and links.
Objectives:
Is it feasable for local diabetes team practitioners to communicate information, news and frequent updates on a self-administered website in an open Web 2.0 patient portal for their patients? May such local sites attract users?
Methods:
Empirical case study over 24 months. Two local diabetes teams (n=24) serving approximately 200/300 patients <19 years of age participated.
Each team actively managed a local website showing contact information, staff presentations and a self-directed feed of locally produced information for their patients. Their local sites were integrated in a Paediatric Diabetes portal on the open Internet (www.diabit.se), including both practitioners’ targeted diabetes information and user-generated contents in forums and blogs. The software allowed practitioners to publish text, images, videos, pdf files for downloads and more. The practitioners’ participation was implemented as part of routine care.
Results:
Team A created 54, Team B 64 new local articles over 24 months for their patients on e g medical devices, local activities, staff changes, research news, food, nutrition and more, mostly using text, images and links.
The local practitioners’ average involvement slowly increased over time. The local sites were managed by a nurse and a dietician. Website self-administration was found feasible by these local editors, though initially the team members had hard to contribute with new information contents.
Multi-professional workshops updating information contents and policies for the portal contributed to inspiration and team education.
Practitioners participated as discussion forum moderators as well. Another new practice gradually emerged; practitioners engaging in open forum dialogues with anonymous patients.
Both practitioners and patients gradually started referring to website contents in their regular care contacts. Overall site visits gradually increased over the 24 months, being most frequent on clinical visit-days but lower at weekends and during night.
The top 10 visited parts of the case study portal (page visits/12 months) were: Open forum (22531), Blogs (10257), the Local teams' websites (9950), FAQ (8423), tailored info on Blood glucose (7773), Insulin (6108), Food (4666), info for Schools (4473), Living with diabetes (4383) and Devices (4303).
Conclusions:
Local practitioners may communicate relevant information, news and updates online to patients when frequently updated on a regular basis.
Users' interest may be further enforced by the active use of forums, blogs and other functions for user-generated contents.
Information systems where both patients and health professionals engage show a potential for improvement of care, by offering users the best of both worlds.
More on this project in JMIR:
http://www.jmir.org/2009/2/e12/
http://www.jmir.org/2010/2/e17/
http://dx.doi.org/10.2196/jmir.1987
Management of paediatric diabetes type 1, including frequent insulin injections and intensive self-control of blood glucose, is part of everyday life. The treatment is performed by young patients themselves, along with their guardians, over time becoming their own experts.
Through the varying phases of the disease trajectory they are guided by paediatric diabetes teams, consisting of nurses and nurse specialists, physicians, dieticians, social workers and/or clinical psychologists. The practitioners meet young patients, along with their guardians, when hospitalized at onset, and continue to see them quarterly or more often as outpatients over many years.
Regular appointments in the clinic and telephone contact when needed remain the traditional means of communication. Electronic communication systems have been available but uptake is slow. Local websites of healthcare providers typically may include basic information and links.
Objectives:
Is it feasable for local diabetes team practitioners to communicate information, news and frequent updates on a self-administered website in an open Web 2.0 patient portal for their patients? May such local sites attract users?
Methods:
Empirical case study over 24 months. Two local diabetes teams (n=24) serving approximately 200/300 patients <19 years of age participated.
Each team actively managed a local website showing contact information, staff presentations and a self-directed feed of locally produced information for their patients. Their local sites were integrated in a Paediatric Diabetes portal on the open Internet (www.diabit.se), including both practitioners’ targeted diabetes information and user-generated contents in forums and blogs. The software allowed practitioners to publish text, images, videos, pdf files for downloads and more. The practitioners’ participation was implemented as part of routine care.
Results:
Team A created 54, Team B 64 new local articles over 24 months for their patients on e g medical devices, local activities, staff changes, research news, food, nutrition and more, mostly using text, images and links.
The local practitioners’ average involvement slowly increased over time. The local sites were managed by a nurse and a dietician. Website self-administration was found feasible by these local editors, though initially the team members had hard to contribute with new information contents.
Multi-professional workshops updating information contents and policies for the portal contributed to inspiration and team education.
Practitioners participated as discussion forum moderators as well. Another new practice gradually emerged; practitioners engaging in open forum dialogues with anonymous patients.
Both practitioners and patients gradually started referring to website contents in their regular care contacts. Overall site visits gradually increased over the 24 months, being most frequent on clinical visit-days but lower at weekends and during night.
The top 10 visited parts of the case study portal (page visits/12 months) were: Open forum (22531), Blogs (10257), the Local teams' websites (9950), FAQ (8423), tailored info on Blood glucose (7773), Insulin (6108), Food (4666), info for Schools (4473), Living with diabetes (4383) and Devices (4303).
Conclusions:
Local practitioners may communicate relevant information, news and updates online to patients when frequently updated on a regular basis.
Users' interest may be further enforced by the active use of forums, blogs and other functions for user-generated contents.
Information systems where both patients and health professionals engage show a potential for improvement of care, by offering users the best of both worlds.
More on this project in JMIR:
http://www.jmir.org/2009/2/e12/
http://www.jmir.org/2010/2/e17/
http://dx.doi.org/10.2196/jmir.1987
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