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WP2 Meeting 14th and 15th June 2010 Nordic School of Public Health Gothenburg, Sweden

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WP2 Meeting 14th and 15th June 2010 Nordic School of Public Health Gothenburg, Sweden Anthony Staines welcomed the group to the meeting and drew attention to the RICHE poster. The poster has two aims, to provide input to the commission and to publicise the project to others. RICHE needs to show clear, structured proposals for strategic investment into child health, and to do this it needs suggestions from a wide range of people and perspectives from a number of backgrounds. We need to use the experience and knowledge of people from a wide range of backgrounds – policy makers, those in the European Union, from children, from member states and so on.

 
 

Minutes RICHE WP2 Meeting 14th and 15th June 2010

WP2 Meeting 14th and 15th June 2010

Nordic School of Public Health

Gothenburg, Sweden

Present: Anders Hjern (AH), Anthony Staines (AS), Else-Karin Gröholt (EG), Rannveig Nordhagen (RN), Polonca Truden (PT), Marlis Schneider (MS), Martin Cichocki (MC), Jose Antonio Diaz Huertas (JADH), Reli Mechtler (RM), Anne McCarthy (AMcC), Jean Kilroe (JK), Geir Gunnlaugsson (GG), Lennart Köhler (LK), Denise Alexander (DA), Michael Rigby (MR), Mitch Blair (MB), Hein Raat (HR).

Apologies: Allan Colver, Matilde Leonardi, Michael Erhart

Day 1: 14th June 2010

Welcome – What is RICHE? – Anthony Staines

Anthony Staines welcomed the group to the meeting and drew attention to the RICHE poster. The poster has two aims, to provide input to the commission and to publicise the project to others. RICHE needs to show clear, structured proposals for strategic investment into child health, and to do this it needs suggestions from a wide range of people and perspectives from a number of backgrounds. We need to use the experience and knowledge of people from a wide range of backgrounds – policy makers, those in the European Union, from children, from member states and so on.

RICHE Progress: WP1 is preparing the taxonomy, and it will include research, funding agencies, researchers and so on. WP2 is focused on measuring child health. What are the priorities for and of children, what are the problems of children. WP3 depends critically on the first two work packages. WP4 is ‘where do we go from here’. WP5 is the platform – all future work of WP1 and WP2 will be done through the platform. It will become a place where child health researchers can communicate, which is a considerable barrier in child health at the moment.

One way of addressing this is to put up grey literature on the site so that it grows. It is likely that there are a number of national repositories of grey literature in Europe, which can be linked to RICHE for all to investigate. This combined with a taxonomy that can be modified by those who add documents, and thus add to the classifications will help to ensure RICHE becomes a valuable resource. A key feature of the RICHE platform is the language function – essential in Europe. A search can be carried out in one language and results from all languages will appear.

A key task at the moment is to engage people with the platform, will soon be asking RICHE members to recruit others to join the site. However, this must be done at a critical point – when there is enough material to show the potential of the website and not too late that it cannot be adapted to the needs of the first users of the site.

Progress Report WP1 – Michael Rigby

The work of WP1 has drawn considerable input from the software developers in WP5. A lot of deep thinking has been absorbed into the project. For example, the age group of child taxonomy has included ‘in utero’ as well as the age groups of children. The discovery that only half the papers in child health research have children as a focus has led to developing a new axis, currently called ‘Actors, Agents and Influences’, and a taxonomy is developing for this.

The focus in development is on the needs of the user. So, instead of the traditional ‘refining/refining/refining’ process that is good practice for developing a traditional taxonomy, but can make things impossible to find for a user we have built the platform around how someone may search for information. Thus a broad category will tell you how many papers there are on a particular subject, and the user can then refine and expand this by clicking through the levels, a user can list a number of tags instead of navigating a ‘branching tree’ taxonomy. An innovative element in the taxonomy is the ‘word cloud’ which lists the most frequent words in a paper, thus potentially providing an insight into the ‘slant’ or main focus of the paper. Another feature is similar to that in Amazon ‘are you also interested in ….’ It is the association of different tags that makes the search sophisticated.

The platform is and will continue to be tested by ‘use cases’ where the kinds of questions that may be asked of it are tried. These are from a number of different points of view e.g. an engineer in a local council enquiring about playground equipment and child safety. It recognises that those who make decisions that affect children’s health and wellbeing are not necessarily part of the health sector. They could be highway engineers, those who set budgets for family support and so on. Our aim is to find ‘hard to get’ information for many diverse individuals.

The site will link to other search engines including PubMed, Embase, CINAHL and so on, but also include other documents such as WHO reports, government reports and other grey literature.

No quality criteria or definitions of child health have been set, because with the focus on the user this will mean that boundaries are placed by the user. If a paper or report is on the database but is of no use, it will never be searched for or retrieved.

Suggestion from MC that quality control by users could be a feature of the site, in a similar way to rating hotel rooms online. Another suggestion is the inclusion of alternative data such as visual material, conference presentations, videos etc. These will be considered by the WP1 team.

Discussion WP1

LK – what limitations on research will be placed – it is impossible to include it all. MR – we don’t know the complete answer to this at present. We know that the platform needs to contain information that is wider than normal public health, but recognise that a paper on a new treatment for a condition may have a knock-on effect that ultimately affects child public health. At the moment, if the user thinks that a paper will have a potential or actual population effect it is eligible for the database. Grey literature is not peer reviewed, but it can still be valuable – will try to be as broad as possible within the realms of pragmatism.

HR – what about policing the platform? For example, if an abundance of papers is placed on the platform by a herbal medicine advocacy group for example.

MR – we will need to find a way of policing the platform without cutting out interesting work. We are alert to both sides of this problem. There is potential for abuse of the system – for example a pharmaceutical company using it to advertise, but the electronic form that needs to be completed before work can be uploaded will have compulsory fields for it to be classified, the security element will be placed here.

AS – there will need to be two levels of moderation, against abuse of the platform by groups such as paedophiles / terrorists and so on, and also n the quality of the work that is placed in the database, there needs to be some sort of feedback function so that poor work is screened out effectively by the community using the platform.

AMcC – in the Irish literature, around ¾ was observational work and had no evaluation or comparison which could clutter up the platform with people’s opinions and no scientific rigour. Must bear in mind ‘no comparison, no conclusion’ as a scientific quality threshold. This is an important issue for consideration by WP1 and WP5.

ACTION POINTS: WP1

  • Investigate possibility of alternative data such as video, conference presentations etc on the database

  • Investigate quality control issues – some sort of feedback or rating system to inform other users about the utility of work in the database and to prevent system being abused and containing poor work or erroneous data.

WP2 – Anders Hjern

This work package is about the science of measuring children and their environment, and the use of child indicators. It includes previous and ongoing work on measuring children and child indicators, and is also interested in regional reports, grey literature and other work about measurement. There is quite a bit of practical use of indicators in this sector. Sharing experiences is important as each nation develops its own indicators. This work package intends to take a broad look at indicators, what exists and what there needs to be. Milestones will be on the website.

The focus in WP2 is:

  • How to measure; what is there and what isn’t (Gaps…)

  • Use of indicators and how they can promote child health.

  • The potential of electronic records – can they collect data and derive new indicators much more easily.

Outcomes of this WP are a report and input to WP3 and WP4. In this WP we need to show what priorities the EU should have for the future. It is important to keep this goal in mind. There will be a specific section of the RICHE platform to deal with indicators, examples of their use, and research into indicators.

The initial report contains three subreports:

  • Subreport 1: Inventory of health and health related behaviour (LK)

  • Subreport 2: Equity (HR)

  • Subreport 3: Disability and Need (Allan Colver and Matilde Leonardi)

The final report contains work from a further four subreports:

  • Subreport 4: International child health indicators

  • Subreport 5 – Regional indicators – how to use child and other indicators in more local public health work

  • Subreport 6 – Secondary measurement research from routinely collected data (AH).

  • Subreport 7 Electronic health records (GG). Iceland is a leading country in establishing a national norm for electronic health records and by using these records to collect data on the national level, but several others are active, while the UK has moved away from its early lead..

Timetable:

A first report is due in February 2011, with the final report to be published in June 2013. In this meeting decisions need to be taken about who will do what task and when.

A meeting will be arranged in early 2011 to discuss the interim report and the first three subreports, possibly in London (MB to check). Invite stakeholders to WP2 meeting in London. Especially UK based ones e.g. disability groups, child poverty action group, youth parliament representatives, date to be decided but will be 2nd week Jan onwards.

A further meeting is probably needed to keep the process going at optimal speed but lacks funding within RICHE. Maybe this can be solved by having this meeting in the Autumn of 2011 connected with the ESSOP meeting in Holland, alternatively the EUPHA meeting in Copenhagen. This will be decided at the next meeting.

Discussion:

RM - How will we approach the already identified gaps in the CHILD report? They may not be the same issues eight years on. LK – will undertake an update of child report as part of subreport 1.

RM – It is essential to provide an explanation in the report to the EU about the reason for choosing such subreports, many other focus areas could have been chosen instead. JADH – issues can be specific to individual countries. HR – we need to make sure we are not forgetting important issues e.g. health behaviours, psychosocial health, mental health for example.

MR – an answer to these concerns is that sub report 1 essentially has to cover everything, unless it is pulled out in other subreports.

Vision towards the future

MR – The part of the RICHE platform will contain research on indicators, together with a repository / catalogue of what people have measured with what evidence. This is where the subreports are going to be placed. It is envisaged that WP2 will move forward in the identification of gaps more quickly than WP1, and thus may stimulate further research opportunities, it is likely that after 12 months we may be producing specifications that can lead to research proposals or influences in calls for proposals. This process can keep the project alive and relevant. AH RICHE can keep indicators up to date but not reports, but each country can keep work relevant to them up to date if they wish.

Subreport 1 – Lennart Köhler

This report is key to developing WP2. It will contain identified research into measurement of child health, taking its starting point from the CHILD report. What gaps have been filled since the CHILD report was published, what new knowledge has been gained and what new questions and needs have arisen? Indicators are an extremely broad topic and have many functions: Increase knowledge, compare fulfilment of policy goals, measure outcome of interventions, facilitate planning among other functions.

To carry out this report will require contacting stakeholders in each country to find out how they develop indicators, collect data and so on. Also will need examples of how indicators are developed and used as a background to action. A key phrase for this subreport is “First measure, then act”.

The CHILD report has stimulated indicator use on international, national and sub-national level. Among the principles of CHILD were that indicators were defined as not providing any answers, they refine the questions. The indicators in CHILD did not consider clinical applications, they focused on the child’s perspective not the adult’s, indicators were regarded in their social context, and were placed in the CHILD framework:

  • A Demographic and socio-economic determinants of child health

  • B Child health status and wellbeing

  • C Determinants of Child Health, Risk and Protective Factors

  • D Child health systems and policy

LK gave examples of using indicators in a range of reports – national and subnational.

  • E.g. 1 Use of child indicators in Greenland – NHV report for a PhD. Examples of indicators used with reference to special conditions in Greenland which contains a small Danish/Inuit population.

  • E.g. 2. Health indicators from Save the Children Sweden. Derived from investigation into the use of the three steps of UN Rights of the Child in Sweden. Examples of rejected indicators for this project were obesity due to lack of data and patchy information, Asthma because it was unclear what asthma rates would tell us about the population’s health especially because of differences in diagnosis, Alcohol use – no data on municipality level, Safe and secure community – a direct connection to children’s health was difficult to prove. 
    Indicators were combined into an index at the request of Save the Children, with a top score of 100. All indicators were given equal weight, and the index was a fairly crude measure. However, the results gave the same three municipalities at the top and bottom of the index throughout the project. The data identified clearly where work was needed. The results were fed back to the municipalities for them to interpret and decide what action to take.

  • E.g. 3. A local study into children in North Gothenburg (deprived part of the city). 15 indicators used as part of the Swedish government study as to how Sweden is adhering to the UN rights of the child convention. All based on thinking developed in the CHILD period.

MR – It is important to find ways in which we can move on from CHILD. The indicators were used in the European Health Indicators 2005 (WHO). But the indicators have not been systematically collected since. The Health for All index could not take the full set of CHILD indicators, and Eurostat could only add one or two data items at a time, all suggested by member states so they could not adopt the child indicators. ChildONEurope – child observatories in Europe, umbrella group on child wellbeing but DG Health is not part of it. There are two updates from CHILD inspired work, which are not published yet, one refers to Child Obesity Behaviour and Nutrition behaviour and physical activity behaviour, contains statistical indicators and structural indicators. Found some huge gaps in knowledge. Another is about Intentional physical injury to children (could not address issue of child abuse because of the terms of reference). Identified that there is much we do not know. Dimension of gap analysis – there is no systematic way of filling them.

Questions

Are there new Child health problems that we were not aware of when CHILD was created

Other examples of indicator projects in Europe and further afield.

  • Elizabeth Craig work on Economic situation and effect on child health in Australasia, using hospital data and aiming to identify what diagnoses would adequately reflect socio-economic problems (Nov 09). Interesting and worthwhile work

  • Global Child Health Indicators: Countdown 2015 (http://www.countdown2015mnch.org/). Based on mortality data, monitor progress in child health indicators – graphically, lack of data identified etc. Scientific papers have come out of these reports.

  • US has ‘Kids in America’ reports.

  • MC – European Observatory Health System and Policy. Work done by Martin McKee’s team – looked at services and systems for handicapped children, try to establish indicators for the report

  • RN – Oslo study of Growth and Development, incorporates child’s own perception of their poverty, it is the only study to do this. Finished data collection, but not yet published.

  • Swedish experience of gaining children’s views came from the English Household Survey. All poverty is relative, cost effective way of including children

  • RM – community level institute health planning in upper Austria. Linked the indicators to risks, combined with interventions and will hopefully provide interesting trends in the future.

  • Early development index – developed in Vancouver and used in Australia. Contains important information

  • Birth cohort studies in Norway.

  • AH – important to include PERISTAT experience in this report. RICHE is in contact with PERISTAT team, need to specifically contact them about indicators. Other stakeholders to contact include CHICOS, SELSI (longitudinal study), UNICEF post 2007 and others.

Discussion

AMcC – The life course perspective means that experience at a certain age will depend on what has gone before. E.g. education of current ‘mother’ may not tell about the child’s former experiences that led up to this situation, if they were in a different family setup (with a different ‘mother’). May be worth future consideration?

A

Potential issue for Roadmaps

H – What should be a focus for the report is posing strategic question for governments. What should a government measure to focus on the most relevant child health issues? This might well be an area for roadmaps to focus on.

 



AH – could be good to ask countries structured questions as to how they decide what indicators to collect. This reflects how different countries use indictors and how their minds work. Why collect these particular items and how to use them

PT – ECHIM indicators about international comparability – some countries don’t want to be compared because they know they cannot do anything about them

EG – Many indicators are data driven – select the ones that you have data on, may explain but still remain the questions about why the data is there.

AMcC – not only measuring the indicator is important but also the range of that indicator. For example, wages- the amount is one answer, but the range is another factor – some countries have a wide difference between the top and bottom and others a more narrow range. This has important consequences for perception of deprivation etc.

Potential issue for Roadmaps

 

 

AH – indices are easy to communicate and are popular – research and discussion around the science of these indices would be interesting – could be a roadmap issue.

 

LK – invited discussion on the CHILD Domains, are they still applicable? Since recent reports (e.g. Marmot report http://www.ucl.ac.uk/gheg/marmotreview/Documents/finalreport) thinking has changed. GG felt it would be useful to reclassify indicators in three levels: Upstream, Midstream and Downstream. LK this might be important as one can see where the indicator influences and reflects on interventions too. RM agreed that three categories from broad to narrow would be worth discussing in the report.

Include marginalised groups in this report (except those related to immigration, ethnicity and socio-economic status that will be dealt with in subreport 2.

Subreport 1 summing up

LK Need to think through what to ask the countries about, need to be as defined as possible to minimise misunderstanding and ambiguity. Not ask too much of people.

Domains – can be thought about after, need to get information first and start writing questionnaires as soon as possible to send out

Look at the progress from CHILD. Measuring mental health, dental health for example is improving. But measurement of child abuse and neglect is still a real gap. The UK has developed a method of measuring abuse and neglect indicator. AH and JADH to work together on this to some extent. Ulrike Ravens Sieberer and MR to write update on measuring wellbeing and mental health. See how much the CHILD report has been used.

Important to pitch this element as a successor to CHILD, this would be interesting to policy makers and EU, it is a logical follow on from CHILD, as the project has had an effect on health that may not be recognised by the EU. MC volunteered to collect data on health behaviour/ health systems. This would be interesting to look at and interesting for politicians.

LK to revisit gaps of CHILD and discuss with WP3 what is going on now and how they have changed.

Subreport 2: Equity – Hein Raat

Focus for this subreport is on equity and inequity and indicators to reflect this in society.

  • Methods – focus on indicators or outcomes

  • Published outcomes from 2000 onwards

  • How to use these indicators to promote child health

  • Electronic records and their role in equity

Methods – indicators of social disadvantage – these are essentially determinants of child health, e.g. when looking at poverty, it is not enough to look at those ‘in poverty’ but need to identify the pathway – one needs to know how poverty relates to bad health, this is the way to improve people’s situations. It is the relationship between the variable and heath that is interesting and valuable

Time schedule – need to work alongside sister initiative INRICH website – International website for research in child health http://www.centrelearoback.org/inrich/ and CHICOS, which is the EU project which is closely related to RICHE on child cohorts www.chicosproject.eu.

The subreport is seeking variables to study inequity in health, many of the variables overlap, but it is not the same as measuring social disadvantage. Suggest that other topics are included:

  • Socio-economic status. SES – job status is not part of SES but describes how much work they do. Unemployment LK pointed out that length of unemployment is important, it may be temporary or there may have been unemployment for generations in the family, these are very different issues.

  • Education - AH – education indicators are problematic with young children, teenage parents have a short education by definition, but there may be co-linearity as they may still continue their education as the child grows up. It is difficult to compare countries because school starts at different ages.

  • Neighbourhood - Indicators can be useful on a neighbourhood level they can be about social disadvantage. Neighbourhood may impact on the family whatever its social class.

  • Poverty - Income is difficult to collect. In some countries it is much harder to find the information than in others. Can have a different impact on child health compared to education – reflect material capacity, quality of the housing. Perceived poverty is a strong predictor of health issues. Debts.

  • Ethnicity –has a cultural dimension. Ethnicity overlaps with SES but is different, it is often linked to low income and education level but this is not always the case. There are measurement issues, in the USA ethnic group means where are your parents/ grandparents from, but in the Netherlands, it means what country were you born in. This does not describe the may 2nd and 3rd generation ‘ethnic’ groups, there is no way to account for other ethnicity or migration history – this has impact on language skills, language of parent etc.

  • Single parents – Concept of single parent family has cultural associations, teenage pregnancies are linked to this. It is a variable with many different backgrounds. AH – complicated in Sweden (and in other countries) after a divorce children live equal time with both parents, is this a single parent family?

 

Definitions: Discussion about different meanings of inequity and inequality. To many, inequality is measuring what is happening and is an absolute measure, inequity is making a judgement that this is not acceptable and is a relative measure (LK, RM). Inequity needs to be combined with other variables to provide meaning of something we cannot accept, for example poverty and premature mortality. WP 2 should talk about inequality and not make a judgement (inequity) unless in the conclusion of the subreport. Using a slope index of inequality is potentially a vulnerable measure - it depends on the size of the population, e.g. comparing the traveller population with Rich/Poor population of the country as a whole would not give valid results.

Discussion

A

Possible identification for WP3 Gaps

McC – the single parent section gives an example of the lack of sensitivity of the indictor to measure current cultural norms. This is something that needs to be addressed. This is an example of measurement issues because we are posing measures we understand instead of deriving them from the population. Family indicators will be a research gap – what about 2 mother families and 2-father families. The concept of ‘family’ is challenging.

 



P

Potential issue for Roadmaps

re-conceived notions of indicators – manual/non-manual work is out of date, and is not captured in indicators. Assuming what you can measure is real, LK stated that a good example is measuring statistics in 5 year periods, this is not really sensitive for children. Is this a question for the roadmaps group, need more of a calculus way of measuring than a stepwise progression.



AH comparability of countries, some variables are easily compared, but others are not, such as education. AS - An example from EUROHEISS, which is a GIS report showed that comparability of classifications is impossible across all countries because of cultural, social and recording differences, this is a vast issue. We could cite experiences where this has been tried in groups of countries, however, e.g. Scandinavia



AMcC – need a broad approach for international indicators which by necessity must use more crude indicators. MC the key is to compare like with like. E.g. car ownership in Paris v London, rather than in Sweden compared with Greece.



AH Need to keep the focus of RICHE which is to focus on the user – give them an idea of the complexity of the tasks, by providing examples of what has been done to draw upon, not solve all the problems. We don’t have good indicators that describe such an important issue, how cultures and society affect health. MR need to remember that RICHE is a source of evidence, what is evidence of unknowns here?



EG gradient in health – stratifying each outcome (e.g. education) therefore the proportion of children living in poverty is different risk factor. There are two different types of measure. AMcC multi level modelling – life course is different statistical methodology to measure some issues. AH suggest using the CHILD report as background and the EU report to be mentioned.



For this subreport, the focus should be on:



  • Methodologies

  • Examples of how they are to be used in countries and across Europe

  • How information is used for policy (closely connected to WP4 Roadmaps)

 

Summing up

Report needs to identify indicators of social disadvantage and describe which ones exist in which in European countries. Also needs to include examples of their use in reporting systems and child health studies.



Also needs to look at the spread of socio-economic status. This is in effect an indicator in itself as the gap between rich and poor can be a marker for poor health. How can this be defined through indicators?



Ask countries to say how they use this sort of indicator



The focus on issues specific to child health and inequalities is often to do with family structure. How are families and ethnicity defined by national statistics?



AH paper needs to summarise knowledge about this. Need to focus so the report is not too big. Not necessarily solve the issue but mention the discussion and work that it could become an indicator. Question to partners how measure spread with reference to child health, there is a very substantial policy point here.



HR research on methodology of indicators – all child health, study on quality of indicators, developing indicators etc. must keep a gap and road map perspective. Need to consider what is significant in the context that the country has, try to capture work funded by the commission and major funders. It is also so much information that things are repeated. Many are working on the same thing but this is not so much of an issue at the moment. It is impossible to do all within the scope of RICHE.



Include marginalised groups that are related to immigration, ethnicity and socio-economic status in this subreport.



Subreport 3: Subreport 3: Disability and Need (Allan Colver and Matilde Leonardi)

Group discussed Allan’s material and letter (which is uploaded on the website). AH – comment on the letter in that it seems to have interpreted the work as more of a recommendation for an indicator than a presentation of the state of the science at this time. Need to reiterate the focus of this subreport to finding methodology examples and examples of research that will provide evidence for others to use. It is not our mission to decide the most appropriate indicator but provide information for others.



M

Possible addition to WP3 Gaps

R – report needs to discuss and describe the kinds of ability and disability you can measure, and what indicators are in existence. This subreport will feed into WP3 Gaps. RM part of the subreport would be where indicators are used (what country) and in which way.

 



Services – how parents perceive the quality of the services they get. Asked by Allan are there good measures? AS, don’t need to collect the information, need to give examples and point the way to what is already done. The South African work is a good role model for what we are going to collect. AS important to keep a perspective as to what we can do within the RICHE project.



Examples of disability indicators from group:

MB England has a national indicator for disabled children, so have an idea of the numbers in this country; this is hard to find in many other countries.



AS Ireland is beginning to measure disability with a census of disability, by measuring those receiving services so have beginnings of knowledge.



RN Norway has a similar system – measures diagnosis and uses received services as the indicator.

JADH – In Spain there is incomplete information, particularly in the under 5s. Work is underway to identify disability indicators, but it is problematic because of the difference in classifications.



GG – this is an important and vulnerable group of children, but difficult to create indicators for because it depends on the definition of the disabled.



M

Potential issue for Roadmaps

B – methodology and comparators may be an issue to feed into WP4 Roadmaps. There are many different ‘users’ of the framework. AS massive spectrum of disabilities but can segment into groups, Look at it from a needs perspective and cost of care perspective.



Summing up:

Some questions to come back to Allan, such as the need to look at the issue from the RICHE perspective of identifying gaps and future roadmap suggestions. Not necessary to identify the best indicator but show what is going on in the field so that others can make informed decisions relevant to their needs. Need to include examples of research and what has been done in the field of disability indicators.

 

MR For example, needs to answer what is the spread of measures of ability, disability, and need. Is it running 100m or holding a pencil. Do a ‘mini CHILD’ with a focus on disability and need – take the huge spread and narrow down to some that are applicable, not create just a massive index. This is an area that was identified as a gap in the CHILD project.

 

Day 2: 15th June 2010

The national representatives will ask the more important stakeholders in each country a series of questions about indicators to provide information for the platform and for the subreports. The three ‘pillar’ questions are:



  • What indicators are used in your country?

  • What indicator / measurement research is being made in your country

  • Examples of indicator use to form policy or promote health?



Indicators in each country

Need to be pragmatic when answering this question – it is crucial to use national indicators that stimulate research. Local indicators also drive research but judgement must be made as to their utility as not all can be included – would be too large a task for one investigator. Will the indicator be of interest to others?



MR, LK AH to devise a structured piece of information to help the national representatives of RICHE pose similar questions to stakeholders in each country. Needs to include the units of management that are used in each country, for example the four countries of the UK, the Länder in Austria etc. We may talk about national indicators but within each country that meaning may be different.



Indicator / measurement research

This is a prime example of a RICHE question that needs concrete answers.



Need to decide if we collect only regular data or include one-off datasets. RM pointed out that many countries only collect data for a particular health report and change topics regularly. Make clear if we are talking about data or indicators. Each country needs to be provided with our definition of an indicator so that there is no confusion. There is a difference between an annual return and a set of national indicators.



RM do we mean all types of research into indicators including their development, testing and use? AS yes, but there is not an enormous amount of research into this. MB as long as the scope is to do with population, children and indicators it is potentially relevant.



Examples of indicators that have been used to inform policy

MR this sort of research will develop new indicators, question can indicators reflect on a national level ‘how do you define ethnicity through an indicator’ for example. RM must be clearly defined. The technical skill of measurement compared with a group that is looking at changing research and making a national indicator. Want to prepare ground fro forthcoming activities. MR may end up with two levels of gaps.



Innovative / novel indicator development published in peer reviewed journals,

Grey literature institutions, national report’s government reports, reports from charities and so on.



One of the stakeholder areas is to bring in organisation and academic partners, such as NHS confederation in the UK, European health managers Association, areas that look at other child health questions.



How do we capture this methodology?

Need to widen stakeholders to technical universities etc EHMA etc.

How best to do this?



 

Timetable

  • 2010 June 1st meeting

  • June / July/August preparation of questionnaire

  • August/ September collection of material to reports and website

  • Oct/ Dec writing of reports 1-3 uploading to website

  • 2011 Feb deliverable 1 (reports 1-3) planning of reports 4-7. Need to warn others that is its on its way. JK and AS to prepare country specific mailing list. Need to prepare short report for website start using material.



Potential date for next RICHE meeting 10th 11th Jan 2011. Venue to be decided.



Subreport 4: International indicators – Denise Alexander

Report not due until 2011, will be discussed in more detail in the January 2011 meeting. International indicators will cover:

  • Examples of international indicators – WHO and EU indicators, CEHAPE, ENHIS, Peristat, ECHIM and so on.

  • Will look at international indicators within Europe – groups of countries within Europe, possibly discuss the need for the focus of indicators to shift to reflect the new countries joining (GG e.g. of polio occurring in one of the new candidate states in Europe).

  • Investigate and provide examples of the ‘report card’ type results as used by the Child Safety Action Plans project.

  • Investigate the barriers that have prevented the CHILD indicators from being taken up fully.

  • Global indicators – Europe in relation to other continents e.g. Australasia and North and South America. Refer to work by University of Washington Department of Health Metrics and work in Australia and New Zealand. Millennium development Goals as an example of where there has been global consensus.

  • Methodologies and methods – means of collecting data in different countries of Europe, what are the differences, what lessons can be learned. Methodologies in other countries – USA, Australia and so on.



Subreport 5 Subnational indicators – Mitch Blair

E

Potential issue for Roadmaps

xample of regional mapping of wellbeing in Italy from ChildONEurope paper. An example of how international or national indicators can be re-presented at a subnational level – this has an important connection to WP4 roadmaps. Local level example from London, injury prevention showed how national indicators were used to identify pockets of deprivation and a potential cause for high level of burns injuries to children. Use such examples to populate the RICHE platform.

 



Raised the question of how to capture grey literature in a realistic way. MR pointed out that MB’s valuable work would not even be published in the form of grey literature. We are not seeing the targeting action as a result o f CHILD and other reports, but that is what we want.

A

Potential issue for Roadmaps

H problem is implementation. There is a mismatch between the research and implementation – in management training include implementation studies. A solution would be to include flags on the RICHE platform to show case studies such as this. The studies are not exactly repeatable but will give enough information for people to adapt the experience to suit other areas. Case study inclusion might be very productive. Possibly a strand of work for WP4 as part of policy into practice.

 

Investigate include case study as methodology exemplars as an addition to the WP Indicators website. RICHE has to have an advocacy role e.g. Save the Children in Sweden. Need to discuss later at further meeting. Case studies are important as long as they meet certain criteria. Important not to overload partners but a case study framework might be useful. Possible for platform to manage this as people can put up case studies and others can mark them, and will thus self regulate.

 

Subreport 6 secondary research – Anders Hjern

Report is to look into two different levels of research with data from routine statistics and surveys, and try to capture this on a European level. The first level is the methodology of using children themselves as informants in routine surveys. Has administrative and routinely collected data been exploited to get data from a child’s point of view? Find examples of where this has been done and research surrounding the topic. The second level is the measurement science in use of the routine data collected. The identification of gaps as well the European resources in this area of research.

M

Potential issue for WP3 Gaps and WP4 Roadmaps

B it is important to capture from each country if there are facilities to analyse secondary data, not just create an inventory of repositories across Europe.

 



AH strong gap/roadmap perspective is likely here, especially for methodology.

 

Subreport 7 Electronic Health Records – Geir Gunnlaugsson

Iceland is moving forward with ECHR but challenge is to have them in other countries. This Subreport has close links to Subreport 6 – one component of electronic child health records (ECHR) is specific information related to preventive child health such as breastfeeding, nutrition and so on that could be drawn out of the records to provide data. ECHRs could be a unique opportunity to create cohort data.



Discussion as to what information in the ECHR would be valuable. Need to find evidence of what has been done, utility of adding free text, different experiences in the EU and globally.



Issues and barriers to ECHRs in other countries – software compatibility within countries is one barrier, there are many others across Europe. Part of the report needs to describe the differing experiences in EU countries. What lessons can be learned from EU countries in this area?



GG – many issues to be resolved in this area, it is a simple and effective way of child monitoring but which indicators are the most important for inclusion – can RICHE work also help identify this and perhaps influence the adoption of ECHRs in Europe. MB inventory of what is coming from other countries is important. This is an issue also for the WP3 and WP4 Gaps and Roadmaps



MR goes back to structured inquiry of the stakeholders – need to be sure about what we need to collect surrounding ECHRs – case studies likely to be important here too.

 

Summing up and Action points

Several important issues raised, it is important we don’t go too fast and lose consistency and detail in the project.



We must not lose sight of loading of evidence into the database, and the identification of gaps and road map issues as we work on WP2.



Each strand will develop a further level, which is a compilation of indicators in use today and the identified gaps. This will link many levels of work, and will need a new ‘page’ on the platform.



Stakeholders to be identified and warned that tasks will be required of them in the Autumn. JK and AS to prepare mailing list of stakeholders.



MR, LK AH to devise a structured piece of information to help stakeholders to identify what is needed. Needs to include the units of management that are used in each country, for example the four countries of the UK, the Länder in Austria etc. We may talk about national indicators but within each country that meaning may be different.



How each subreport / stream develops will be discussed and moderated in the January 2011 meeting.



A template for case studies needs to be developed as these will be a useful addition to the knowledge on the platform, the case studies themselves will be regulated by users. There is potentially a vast range of stakeholders and information on the site from small case studies to global concerns.



Need to set up forum so people can use the website to put material on – all future work of WP1 and WP2 should be carried out using the RICHE platform as much as possible. Need to think about what is needed and liaise with Mel and Con.



With reference to the stakeholder groups need to have comments within a specific time frame, such as end July, in order to send collection instrument in the summer and tasks for WP2 in the Autumn.



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