Program

Identifying, defining and measuring the Hard To Reach (HTR):

• Metrics for defining HTR populations
• Measuring undercounts
• Administrative records to improve measurement
• Sampling HTR populations

Techniques and Methodologies:

• Use of innovative survey methods
• Recruitment methods
• Targeting the HTR
• Use of social marketing and outreach campaigns
• Overcoming language and literacy barriers
• Dealing with complex living and housing situations
• Tracking and tracing hard to reach populations

HTR subpopulations:

• Challenges counting racial minorities
• Immigrant populations
• Indigenous populations
• Highly mobile populations
• Homeless and refugee populations
• Cross-cultural similarities and differences in HTR populations
• Populations affected by natural disasters
• Populations in zones of armed conflict
• Stigmatized populations

Plenary Session Part One

The All Ireland Traveller Health Survey:
Methods for Surveying a Hard to Count Population

Speaker:
Professor Cecily Kelleher - Head of UCD School of Public Health and Population Sciences, University College Dublin

Travellers are a nomadic minority group on the island of Ireland, with a five hundred year history. They are socially disadvantaged and have traditionally had poor life expectancy and health status. Until this study was commissioned by the Departments of Health in both island jurisdictions, no comprehensive health survey was undertaken since 1987.

The study was overseen by a technical steering group of stakeholders and was for, with and by Travellers. The community is hard to reach in geographical and psychosocial terms and has high levels of illiteracy. Previous health surveys were brief oral interviews only. An extensive mapping and scoping exercise was first undertaken to locate an estimated forty thousand Travellers. Two information videos were made at outset and completion of the project and Traveller project networks utilised for education, training and dissemination.

A census survey of families was planned, and a novel oral-visual electronic questionnaire was designed to be computer- administered by trained peer researchers using validated questions from other health surveys, with total respondent burden time of 45 minutes. A key informant, usually the mother, was interviewed first and then at random either a 5, 9 or 14 year old child health status interview by proxy or an adult man or woman. A direct electronic upload procedure was followed. Retrospective recording of any deaths in the household in the previous year was validated with death certification to calculate mortality rates and a prospective cohort follow-up of pregnant mothers for one year post infants' birth was also undertaken. Triangulated focus group and health service provider surveys were also carried out. At completion of the survey, which had an 80% response rate, feedback of results and a recognition ceremony for fieldworkers was held. This project overcame formidable barriers to completion, and was successful because of Traveller engagement throughout.

Plenary Session Part Two

The All Ireland Traveller Health Survey:
A Community Perspective from Pavee Point

Speakers:
Brigid Quirke - Health Policy Officer, Pavee Point
Missie Collins - Peer Researcher, Pavee Point

Irish Travellers are a people with a separate identity, culture and history, although they are as fully Irish as the majority population. The name "Travellers" refers to a nomadic Irish ethnic group, native to Ireland for centuries.Travellers, Gypsies and Roma have some things in common. They share a nomadic tradition and its associated lifestyle, culture and values. Unfortunately, they also share a long history of persecution, rejection and social ostracism.

There are an estimated 40,000 Travellers living on the island of Ireland. Travellers have their own language, called "cant" or "gammon", which is sometimes referred to by academics as "shelta". This is a language mostly used by Travellers to speak with each other. There are around 10,000 Travellers in the United States, with around 2,500 Travellers living in a place called Murphy Village, South Carolina. They are descendants of Travellers who left Ireland, mostly during the 1845-60. They have maintained a separate cultural identity, and several Irish Traveller traditions, including some usage of cant, devout Catholic faith, and strong communal ties.

Irish Travellers still face racism today - whether it is being refused service in shops or bars or in trying to maintain their nomadic traditions which is actively discouraged by the laws and practices of local authorities. Irish Travellers experience poorer health than the general population. They have much shorter life expectancy, for men life expectancy at birth is the same as it was for the general population in the 1940s and the suicide rate for men is seven times that of the general male population. Infant mortality among Travellers is more than three times the rate observed in the general population.

Pavee Point is a non-governmental organisation committed to the promotion and realisation of Travellers' Human Rights. Pavee is a word used by Travellers to describe themselves. Pavee Point is a partnership of settled people and Travellers, working together and operates regionally, nationally and internationally to ensure that Irish Travellers and their counterparts are recognised and respected, that their human rights are implemented, and that inequalities and discrimination faced by Travellers are named and addressed.

Pavee Point have been engaged with Traveller Health since 1994, when they piloted the first Primary Health Care for Travellers project (PHCTP's), successfully training 16 Traveller women to become Community Health Workers, this was seen as a model of good practise in the National Traveller Health Strategy and has since been replicated in 40 other areas around the country, via the National Traveller Health Network, which is facilitated by Pavee Point. This network was used as the key infrastructure to facilitate the engagement of Travellers in the AITHS, from the scoping and mapping of Travellers, through the consultation process on the instruments, to the engagement in the study and the dissemination of the findings.

In the second part of the plenary session, representatives from Pavee Point will give the context and perspective of the community on the All Ireland Traveller Health Survey, the engagement with the survey through all the stages of the research, and the impact of the research on the lives of the community told by the Travellers themselves via video from Dublin.

Paper sessions will typically consist of 4-5 participants. Sessions will have 4-5 paper presenters and no discussant or 3-4 paper presenters plus one discussant. Each session will last for 90 minutes. Each session will reserve 5 minutes for introductions by the chair and 15 minutes of floor discussion at the end. Time will be equally allotted among each presenter, including discussants. This means that sessions with 5 presenters will each have ~14 minutes to speak, while sessions with 4 presenters will each have ~18 minutes.

It will be the chair's responsibility to keep presenters within their allotted time and to moderate the floor discussion.

The conference will feature poster sessions on November 1 and 2. These sessions will allow authors to engage with conference attendees in an interactive fashion that encourages discussion, questions, and answers. Poster sessions provide the opportunity for face-to-face extended discussions and the ability to display graphic and tabular material.

Each author is provided a 4 foot high by 8 foot wide (122 cm by 244 cm) bulletin board on which to display a summary of the paper. Authors must remain near the bulletin board for the duration of the session (45 minutes) to answer questions. Note that poster presenters are not supplied with audiovisual equipment or electricity.

Poster Tips

Ideally, a well-constructed poster is self-explanatory, achieving both coverage and clarity.

Coverage: Have you provided all the obvious information? Will a casual observer walk away understanding your major findings after a quick perusal of your material? Will a more careful reader learn enough to ask informed questions?

In addition to title/author and abstract, most successful posters provide brief statements of introduction, method, subjects, procedure, results, and conclusions. Ask yourself, "What would I need to know if I was viewing this material for the first time?"

Clarity: Is the sequence of information evident? Indicate the ordering of your material with numbers, letters, or arrows when necessary. Is the content being communicated clearly? Keep it simple. Place your major points in the poster and have the nonessential, but interesting, sidelights for informal discussion. Be selective. Your final conclusions or summary should leave observers focused on a concise statement of your most important findings.

Each poster display should include a lettered sign giving the title and name(s) of the presenter(s). This sign should be 6" in height with letters at least 2" high in a bold font. Extensive, imaginative use of captioned illustrations, photographs, graphs, or other types of visually appealing material is an extremely effective mode of communication in a poster presentation.

People attending a poster session are free to move about from poster to poster, making it difficult to read excessive text. With this in mind, you may wish to limit text and use large fonts. This will allow the poster to be read from several feet away. Do not mount materials on heavy board, because these may be difficult to position on the poster board. Be sure to provide clear labels for each section of your presentation.

Helpful Online Resources for Poster Creation

• How to Prepare a Poster, SIAM News, www.siam.org/meetings/guidelines/poster.php
• Websites offering printing services for scientific posters:
  www.makesigns.com/scientific_posters.htm www.PosterSession.com www.scifor.com

Submission to Journal Special Issues

The H2R organizers are planning one or more journal special issues containing manuscripts that are based on paper and poster presentations from the conference:

1. Journal of Official Statistics: A special issue of JOS, to be published in 2013, will be devoted to a subset of H2R presentations. Interested authors should begin work on their paper prior to the conference, and be prepared to submit a manuscript for review by January 18, 2013:
   • Submissions should be sent directly to Gordon Willis (willisg@mail.nih.gov), by January 18, 2013.
   
   
   • After initial review by the Special Issue editors, those to be considered for inclusion in JOS will go through the journal's usual peer review process.
   
   
   • For instructions on formatting a JOS manuscript, please refer to http://www.jos.nu/Journal_Information/information.asp: See the section 'Preparation of Manuscripts'.
   
   
   • For more information, contact Gordon via email.


2. Survey Practice: We are pleased to announce that plans have been finalized for the journal Survey Practice to publish a special issue of contributed papers from H2R. The journal frequently publishes short pieces, primarily devoted to applied research. Note that Survey Practice articles are condensed to a summary of about 1,500 words, and may reference a longer version of the article located elsewhere. Thus, if your full article is in the online proceedings of H2R, and Survey Practice publishes a summary version of your article, you can have a link from the journal to the proceedings.
   
   
   • Submissions should be sent directly to Gordon Willis (willisg@mail.nih.gov), by January 18, 2013.
   • After initial review by the Special Issue editors, those to be considered for inclusion in Survey Practice will go through the journal's usual editorial review process.
   • For instructions on formatting a Survey Practice, please refer to www.surveypractice.wordpress.com/guidelines-for-authors/