The Health, Innovation, ICT and Pregnancy-project (HIIP)
The overall purpose of this project is to increase pregnant women’s knowledge of prenatal screening for Down syndrome, and thereby help them to make an informed choice about the screening.
The project is planned as a PhD research study into whether the use of an innovative eHealth intervention (an interactive website) may be an appropriate solution when it comes to increasing awareness in the target group (pregnant women). The project takes form as an intervention study in clinical innovation with focus on eHealth communication with patients carried out in a highly specialized unit for obstetrics at Odense University Hospital.
Over the years, worldwide research has produced valuable assistance in the area. Focusing on the user needs, this project has developed an eHealth solution with information about the screening program for Down syndrome. The website is an interactive platform where pregnant women can seek information in accordance with the hospital’s patient care. The research aims at generating new knowledge about ways to inform pregnant women about prenatal screening for Down syndrome.
Prenatal screening for Down syndrome is a free offer to all pregnant women in Denmark. In order to make an informed choice on whether to have the screening or not, the pregnant women are, among other things, informed by health professionals of the benefits and potential risks of screening for Down syndrome. The aim of this information is to assist the women come to their own decision and to make an informed choice. For this to happen, it is vital that the counselling they receive is impartial, adequate and comprehensive, as the information is used to make choices where ethical values play a major role.
For this reason, it is important to continuously improve the information available to the pregnant women and the way it can be accessed. With constant development in the information and communication technology, it is relevant to examine the possibilities of using eHealth solutions to reach this target group.
As this innovation project is the basis of a clinical PhD study as well as an investigation of the possibilities for eHealth interventions, it has been designed to live up to international standards for clinical research.
Part one – identification of problem, user needs and systematic review
This phase of the project consisted of an identification of the problem related to information about prenatal screening for Down syndrome for pregnant women. Included in this phase was the preparation of a systematic review to summarize current knowledge on interventions in the area. Focus group interviews with patients and staff as well as field observations were also included in the systematic review.
Part two – development of suitable intervention
The second part of the project consisted of developing a web solution based on user needs, with relevant information about prenatal screening for Down syndrome.
The web solution has been developed and designed in close connection with members of the target group, the staff from the hospital and in cooperation with multimedia design students. The web solution contains text, images, video, chat room and infographics, and has a special focus on providing statistical information to patients.
Part three – measuring the effect of the intervention
The last and crucial part of the project is the effect measurement of the intervention; does it actually work and is it better or worse than the traditional information channels used? The effect of the intervention will be measured through a randomized controlled trial. Since August 2013, 1200 pregnant women have been invited to participate in the project based on a set of exclusion criteria (age over 18, Danish speaking and general willingness to participate). 600 women were invited to have access to the website and the information included and 600 participants received the traditional information about the screening (hospital webpage and booklets). All women who choose to participate in the program will be asked to fill out a questionnaire 6 weeks after their first scan.
The questionnaire has several parts, but the main objective is to investigate whether the women made an informed choice or not when choosing to have the screening performed.
The questionnaire will therefore provide an answer to whether or not the interactive website makes it easier for the women to make an informed choice or not. The tool used in the questionnaire is the Multidimensional Measure of Informed Choice (MMIC) which is developed by an English research group in 2001. It is used in many countries but not in Denmark, so a validated translation into Danish had to be made with the help of the original research group. Secondary outcomes are whether the information on the website makes the women think more about participating in screening for Down syndrome, and whether they feel more informed about their well-being and their concerns regarding pregnancy in general.
The randomized controlled trial is scheduled for completion in mid-June 2014. Results of the study will be published in relevant journals and are expected to be available in early 2015.