READING BETWEEN THE LINES

A COMPARATIVE ANALYSIS OF EXCLUSION VERSUSINCLUSION OF GREY LITERATURE ON CONVENTIONALLITERATURE SEARCH RESULTS WHEN DEVELOPING A

RESEARCH QUESTION.

by

Terrance Richard Howard

PROJECT SUBMITTED IN PARTIAL FULFILLMENT OFTHE REQUIREMENTS FOR THE DEGREE OF

MASTER OF SCIENCE

In theFaculty of Health Sciences

© Terrance Richard Howard 2008

SIMON FRASER UNIVERSITY

Spring 2008

All rights reserved. This work may not bereproduced in whole or in part, by photocopy

or other means, without permission of the author.

APPROVAL

Name:

Degree:

Title of Thesis:

Examining Committee:

Chair:

Date Defended/Approved:

Terrance Richard Howard

Master of Science Population and Public Health

READING BETWEEN THE LINES

A comparative analysis of exclusion versusinclusion of grey literature on conventional literaturesearch results when developing a researchquestion.

NameMichel Joffres MD, PhD

Associate Professor, Program Director-GraduateProgram, Faculty of Health Sciences

NameMarina Morrow PhD

Assistant Professor, Faculty of Health Sciences

NameCindy Patton PhD

Professor, Canada Research Chair I Women's Studies ISociology I Anthropology

NameExternal ExaminerJulian Somers PhD

Associate Professor, Faculty of Health Sciences

November 29,2007

ii

SIMON FRASER UNIVERSITYLIBRARY

Declaration ofPartial Copyright LicenceThe author, whose copyright is declared on the title page of this work, has grantedto Simon Fraser University the right to lend this thesis, project or extended essayto users of the Simon Fraser University Library, and to make partial or singlecopies only for such users or in response to a request from the library of any otheruniversity, or other educational institution, on its own behalf or for one of its users.

The author has further granted permission to Simon Fraser University to keep ormake a digital copy for use in its circulating collection (currently available to thepublic at the "Institutional Repository" link of the SFU Library website<www.lib.sfu.ca> at: <http://ir.lib.sfu.ca/handle/1892/112>) and, without changingthe content, to translate the thesis/project or extended essays, if technicallypossible, to any medium or format for the purpose of preservation of the digitalwork.

The author has further agreed that permission for mUltiple copying of this work forscholarly purposes may be granted by either the author or the Dean of GraduateStudies.

It is understood that copying or publication of this work for financial gain shall notbe allowed without the author's written permission.

Permission for public performance, or limited permission for private scholarly use,of any multimedia materials forming part of this work, may have been granted bythe author. This information may be found on the separately cataloguedmultimedia material and in the signed Partial Copyright Licence.

While licensing SFU to permit the above uses, the author retains copyright in thethesis, project or extended essays, including the right to change the work forsubsequent purposes, including editing and publishing the work in whole or inpart, and licensing other parties, as the author may desire.

The original Partial Copyright Licence attesting to these terms, and signed by thisauthor, may be found in the original bound copy of this work, retained in theSimon Fraser University Archive.

Simon Fraser University LibraryBurnaby, BC, Canada

Revised: Fall 2007

ABSTRACT

This comparative analysis demonstrates how the inclusion of grey

literature changes the understanding of an issue and influences the formation of

a research question. Often, due to various resource constraints, researchers

commonly choose a conventional literature search of academic and peer-

reviewed journals to search for previous work conducted on the proposed issue.

Grey literature is not routinely included as part of this process. Grey literature is

information that would not be published in mainstream scientific/peer-reviewed

journals, and conventional repositories or otherwise accessible when conducting

a literature search. The definition is one that is constantly being redefined and it

includes unpublished materials like policy reports, research studies from

organizations and community-generated information.

This comparison demonstrates the significant implications and contextual

value added to the process of research question development through the

inclusion of grey literature pertaining to the issues of HIV incidence, harm

reduction, and segregation of HIV-positive prisoners in Canada.

Keywords: grey literature, prisoner, health, HIV

Subject Terms: grey literature, harm reduction in Canadian prisons, HIVincidence rates in Canadian prisons, HIV prevalence rates in Canadianprisons, involuntary segregation ofprisoners with HIVIA IDS

iii

ACKNOWLEDGEMENTS

I would like to acknowledge my father for instilling a critical nature in me at

an early age. When confronted with the statement "No, I don't think so... " my

reply became "We'll see about that." This has been a fundamental perspective

for me throughout my work and education, and has served me well.

I would also like to acknowledge the unflinching support of Dr. Cynthia K.

Patton, who continues to champion my research work through the many

challenges encountered along the way.

Finally, the enthusiastic encouragement and constructive criticism I have

received from Dr. Marina Morrow from my first interview determining my

acceptance into the graduate program, through the defence of my capstone

project.

iv

TABLE OF CONTENTS

Approval ii

Abstract iii

Acknowledgements iv

Table of Contents v

List of Figures vi

Objectives: 1

Background: 2Review of literature and topic selection: .4

Methods: 6

Results: 10

Incidence/prevalence rates of HIV/AIDS in prison: 10Harm reduction program delivery in prison 14Segregation of prisoners with HIV/AIDS: 18

Discussion: 21

Conclusion: 25

References 26

v

LIST OF FIGURES

Figure 1: Selection and Comparison Process 9

Figure 2: Comparison Process 23

vi

OBJECTIVES:

The purpose of this comparative analysis is to determine the effect of the

inclusion of grey literature on decision-making when developing a research

question in three topic-areas related to the health of prisoners living with

HIV/AIDS in Canada: HIV incidence rates, harm reduction strategies, and

involuntary segregation of prisoners with HIV/AIDS. Groups of researchers

interested in public health issues generally use conventional literature search

methods and make judgments about the quality and relevance of information

they retrieve (Greenhalgh et aI., 2004). These judgments influence the content of

their research proposals and determine the nature of their research question.

The addition of grey literature before forming research questions can alter this

process. The definition is one that is constantly being redefined and it includes

unpublished materials like policy reports, research studies from organizations

and community-generated information. Its addition to health research has the

potential to significantly influence the initial impression of an issue given through

conventional academic findings alone, and result in different research

trajectories. In this paper, I examine the three topics on the state of health of

prisoners before the inclusion of grey literature and then after, to determine the

differences in this initial impression.

BACKGROUND:

Professional interest in developing research questions on prisoner health

and the subsequent scepticism of the rosy picture of Canadian prisons portrayed

by the results of a conventional research literature search fuelled the desire to

obtain a more informed opinion of living conditions for HIV-positive prisoners in

Canada.

Research studies in Canadian prisons are conducted by a select few

research teams and are tightly controlled by Correctional Services Canada

(CSC). The process of gaining access to incarcerated prisoners is highly

problematic due to the militaristic environment of Canadian prisons. While some

of these procedures are necessary for ethical reasons, topics are scrutinized for

possible negative publicity and potential political"heat." Entry into prisons can

only be obtained (or denied) following a series of security checks, often requiring

months of advance preparation. All research topics must be pre-approved by a

CSC national and/or regional research review board, another lengthy process

often ending in denial. Few researchers are keen to queue up for the challenge

and scrutiny of this cumbersome process, preferring to rely on information readily

available through conventional search methods. Researchers often prefer to use

post-release prisoners as subjects for research project development. This tightly

controlled research data stream produces very limited results with lengthy

periods between studies that are frequently done by the same CSC-sanctioned

2

researchers (such as Calzavara et aI., 2007; Ford et aI., 1995; Rothon et

al.,1994).

When developing questions, researchers typically utilize a conventional

literature search engine. The substance of the resulting literature includes

predominantly scientific results, academic papers, and evidence with a heavy

emphasis on quantitative empirical evidence. Without the inclusion of "grey

literature" to provide atmospheric background or possible explanations for why

findings are what they are, one's opinion becomes highly skewed toward

academic findings lacking in descriptive evidence. The lack of contextual

descriptions of issues in academic research findings leaves the reader wondering

about the background of an issue and what might be missing from the search

results. Often, conventional search techniques (e.g. entering index terms or

keywords in electronic databases) draw a poor yield, and it becomes necessary

to rely on "snowball" methods (pursuing references of references) to obtain

germane theoretical papers, or on consulting individuals recognized as expert in

the field.

Grey literature, when carefully collected, is as empirical as scientific data.

Given that grey literature consists of community-produced materials, it is rare to

find it, in its various forms-like peer-generated evidence, research data

collected by community service organizations, policy reports, or accounts given

by specific populations (prisoners, HIV-positive men)-in scientific journals.

While the Internet has made it somewhat easier to find grey literature, without

considerable diligence, it can still be easy to overlook. And yet, its descriptive

3

content provides insight into the lives of people affected by the issue under

discussion. Documented in the words of people affected by the issue, these

historical accounts of issues provide integral knowledge of why conditions exist

and offer opportunities to address core issues. Grey literature often provides

insider insights into the background politics of an issue and offers community­

based research results from the perspective of the participants.

When developing proposals, researchers also rely on advice from other

researchers recognized as experts-rather than the laypeople who produce grey

literature-further excluding a subject perspective when forming opinions and

promoting reliance primarily on science. What is the effect of this exclusion and

the reliance on available evidence-based data when developing a research

question for new research work? Does this result in under-formed opinions by not

including all of the evidence when forming new research questions? If it is

possible to gain a better understanding of an issue of interest, the impact of this

knowledge must surely influence the formation of the theory/hypothesis by which

one proceeds. This paper demonstrates the influence on research questions

when grey literature is taken into account.

Review of literature and topic selection:

A conventional literature search and article review was conducted using

PUBMED/Medline search engine using the keywords prisoner, health, and HIV.

Collection and review of the articles returned were annotated for topical

references and subsequently compared to grey literature collected using the

same search criteria.

4

The grey literature search was conducted using material obtained from a

community based seNice organization that participated in allowing their library

collection to be catalogued and digitized for the Simon Fraser University

institutional repository as part of the CHODARR Project.

The VANDU collection of grey literature provides information from

community based seNice organizations across the country that provide direct

contact with prisoners through outreach programs. Information on the conditions,

programs, security policies etc. of prisons is routinely collected and documented

by workers providing support seNices to prisoners affected. This material is not

published by the prison administration or CSC sanctioned, nor conducted under

rigorous scientific protocol. The documented information teems with rich

perspective in the voices of prisoners as to why conditions exist, and provides

thick descriptive background information on the climate inside the walls of

prisons.

The prisoner health topics of: incidence/prevalence rates of HIV/AIDS in

prison, harm reduction program delivery, and segregation of prisoners with

HIV/AIDS, were selected for comparison in this paper. These topics were

suitable because of the careful collection and cataloguing of the material in the

VANDU library, and the scarcity of sanctioned Canadian prisoner health research

data.

5

METHODS:

A conventional literature search and article review was conducted using

the PUBMED/Medline search engine with the keywords "prisoner," "health," and

"HIV." This returned 46 articles from the following journals: The Prison Journal,

Criminal Justice and Behavior, Crime and Delinquency, and Criminology, as well

as Corrections Services Canada reports. Articles were collected, reviewed, and

annotated for topical references and subsequently compared to grey literature

collected using the same search criteria.

The grey literature search was conducted using material obtained from the

Vancouver Area Network of Drug Users (VANDU), a community-based service

organization that allowed their holdings to be catalogued and digitized for a new

online repository at Simon Fraser University called the Community Health Online

Digital Archive Research Resource (CHODARR, see

http://health.arts.sfu.ca/index.html). CHODARR makes grey literature collected

from the libraries of community service organizations in the Vancouver area

searchable and available free on the Internet. VANDU's community collection

contains material gathered by members while attending conferences, meetings,

and educational seminars and while working with other community-based

organizations. It also includes anecdotal evidence collected during the course of

advocacy work and personal accounts from peer group meetings. Its actual

content contains information from community based service organizations across

6

the country in direct contact with prisoners through outreach programs.

Information on the conditions, programs, and security policies of prisons is

routinely collected and documented by workers while providing support services

to prisoners. This material is not published by the prison administration or

sanctioned by the CSC. Nor is it conducted following rigorous scientific protocol.

The documented information teems with rich perspective in the voices of

prisoners as to why conditions exist and provides thick descriptive background

information on the climate inside the walls of prisons.

A manual search of grey literature using the same "prisoner," "health," and

"HIV" search parameters returned 34 articles from the VANDU collection housed

by CHODARR. The materials consist of meeting minutes, survey results, peer­

directed info sheets, and community-based service organization reports on the

living conditions of HIV-positive prisoners in Canada. To further refine the search,

a snowball method of sourcing important, milestone articles (from references of

references) was used to select topic issues for comparison. These topics were

. refined to: incidence/prevalence rates of HIV/AIDS in prisons, harm reduction

program delivery, and segregation of prisoners with HIV/AIDS. These provided

enough information to perform a comparative analysis between the two search

methods.

A refined search on PUBMED returned 9 articles on HIV incidence in

Canadian prisons, 4 articles on harm reduction in Canadian prisons (some

crossover of topics existed in articles), and only 2 articles referencing HIV

segregation in Canadian prisons.

7

The grey literature search results returned 34 articles, with some

crossover of topics and referrals to other supportive articles. Each set of articles,

from both search methods, was reviewed for relevant content and annotated.

References of references were scanned to search for index articles and historical

context. Direct comparison of both sets of findings on selected topics was

conducted to get a sense of the overall impression portrayed by each article.

Comparison between samples was done with the aim of achieving a realist

review. In such a review, references, articles, and quotes are included to validate

arguments and offer areas to consider (see Savoie et aI., 2003), rather than offer

definitive answers.

Figure 1 demonstrates the selection and comparison process

8

Figure 1: Selection and Comparison Process

PUBMED search

Electronic Journals:• The Prison Journal• Criminal Justice and Behaviour• Crime and Delinquency• Criminology• Criminology

• Annotation

• Topic selection

CHODARR search

VANDU collection:• Meeting minutes• Community Organization reports• Advocacy outreach reports• Prisoner newsletters

• Annotation

• Topic selection

Comparison process• Reviewed for sense of landscape on each topic

• Portrayals analyzed for similarities/differences

• Supportive quotes selected from each

• Summary of the article's position on each topic

FindingsDiscussionLimitationsConclusion

9

RESULTS:

Incidence/prevalence rates of HIV/AIDS in prison:

The literature results from the conventional search generally reported HIV

incidence/prevalence rates obtained from data collected by CSC-sanctioned

researchers. This data is made public by CSC through its periodic "Infectious

Diseases Prevention and Control in Canadian Federal Penitentiaries" reports.

However, the most recent report (CSC, 2003) contains inaccurate measurements

of incidence and prevalence rates. Accurate rates reflect the number of positive

results measured against the population at risk. CSC data reports the number of

voluntarily tested prisoners against a denominator of the entire prison population.

For accuracy, those not at risk should be excluded from the calculations. At the

very least, segregated prisoners, prisoners on drug-free ranges, hospitalized,

abstinent, and several other sub-populations who are not at risk for infection

should be excluded from the denominator. Furthermore, due to fears of that CSC

could obtain information on the HIV status of prisoners and the perceived

negative implications of this knowledge, only prisoners who are reasonably

certain that they are HIV-negative volunteer to be tested. This is a serious

selection bias that is not reflected or acknowledged in the CSC-reported figures.

The inaccuracy is only briefly mentioned in CSC research reports in the

introduction and summary sections, but is excluded from tables portraying

incidence/prevalence rates and from media releases citing the low rates of

10

HIV/AIDS in Canada compared to other countries. The following excerpt

demonstrates reported rates, at the federal level, contained in summary tables

provided in bullet form for readers: "total reported HIV cases: At year end 2001,

1.8% of all inmates were reported to be HIV-positive, compared to 1.7% in 2000."

In the same report, a table indicates that reported cases of inmates testing

positive for HIV for the year 2000 was 214 (against a total population of 12,681,

or 1.68%). For 2001, that number was 233 (against a total population of 12,755,

or 1.82%) (CSC, 2003, 6-7). Note that the parameters of the voluntary sample

are not clarified in these figures. The most recent study of HIV infection at the

provincial level, among inmates in Ontario's remand facilities, was completed in

2004. It showed that 2.1.% of adult men, 1.8% of adult women, and 0% of young

offenders were HIV positive (Calzavara et aI., 2007). But again, we aren't told

that this is a voluntary sample, or that the figures are measured against total

population.

Perpetuation of the miscalculated rates is evident in articles published by

academic journals that cite the questionable rates. For example, in the Canadian

Medical Association Journal Catherine Hankins draws on a previous study by

Calzavara, completed in 1994 and conducted in a similar fashion, to produce her

numbers:

There now appears to be little doubt that correctional institutionshave the highest prevalence rates of HIV infection to be found inany institutional setting in Canada. ... findings from Ontariocorrectional institutions, of prevalence rates of 1.2% among womenand 1.0% among men, and in Quebec prisons, of 7.7% amongwomen and 3.6% among men, corroborate these findings. At firstglance, these studies provide clear support for the view thatsomething must be done, with some urgency, about HIV, hepatitis

11

B and other serious sexual and blood-borne infections amonginmates in Canada. Closer examination of these studies indicates,however, that direct confrontation with entrenched attitudes andstrong beliefs concerning incarcerated injection drug users will beinevitable if effective public health prevention policies and practicesare adopted. (Hankins, 1994)

In summary, conventional literature, relying on a limited data stream,

portrays misleading HIV incidence and prevalence rates in Canadian prisons that

downplay the severity of impact of HIV/AIDS and has the potential to alter the

development direction of a new research question if taken at face value.

A very different picture emerges from newsletters, outreach worker notes,

prisoner's journals, and other materials obtained from the grey literature search.

Many who work in the field believe that true incidence and prevalence rates are

significantly higher due to the many barriers to testing and HIV status disclosure

in a prison setting. Fear of stigmatization, physical violence, and exclusion from

drug access are all vividly portrayed in grey literature (field notes of outreach

workers, prisoner journals, etc.), and are stated as reasons preventing voluntary

testing by prisoners and explanations for low rates of prisoners willing to be

tested (CHALN, 2005).

Additionally, there is substantial evidence in both sets of literature that

injection drug users in the Canadian prison system continue to inject illicit

substances while incarcerated (Ford et aI., 2000). Researcher Kate Dolan

records her opinion and scepticism on under-reported rates and writes:

HIV transmission does occur in prison but it is difficult to gatherconclusive evidence. On occasion the lack of evidence has beeninterpreted as transmission being rare (Brewer, 1992; Brathwaite etal. 1996; Horsburgh, 1990). However, most of the studies that have

12

reported relatively low levels of HIV transmission in prison wereconducted early in the HIV epidemic and sampled long-termprisoners who would have been at less risk of infection than short­term prisoners. (Dolan, 1997)

Finally, we can add this insight from the Canadian HIV/AIDS Legal

Network:

In Canada's federal prison system (which houses people sentencedto prison terms of two years or more), the number of reported casesof HIV/AIDS rose from 14 in January 1989 to 159 in March 1996 to217 in December 2000, to 251 in 2002 (data for 2002 arepreliminary). This means that 2.01 percent of all federal prisonersare known to be HIV positive. The actual numbers may be evenhigher: the reported cases, provided by the Correctional Service ofCanada (CSC), include only cases of HIV infection and AIDSknown to CSC, but many prisoners may not have disclosed theirHIV status to CSC, or may not know themselves that they are HIV­positive. (CHALN, 2005)

This is an important distinction that is barely mentioned in the scientific

journals or in CSC's own report on Infectious Diseases in prison.

Despite its nods to the possibility that rates of HIV might be higher, the

CSC-sanctioned research data send a message that rates are not so high-a

message other researchers have taken up. There is no mention of the proper

calculation of rates using only the number of prisoners at risk for HIV with the

exclusion of many prisoners who are not at risk. Meanwhile, the grey literature

illuminates some of the reasons for low reported rates-because of

miscalculations, due to prisoners' reluctance to be tested and/or included in

statistics, and because of their justified fears for confidentiality of their HIV sero-

status while incarcerated.

13

Harm reduction program delivery in prison

The conventional literature portrays willingness, cooperation, success, and

harmony in the development and delivery of harm reduction programming in

Canadian Federal prisons. Certainly, official CSC policy requires the

implementation of such harm reduction programs. However, recent content on

the CSC website implies that current strategies are ineffective. These content

pages, which have recently been taken down, quote conventional (non-grey

literature) data to cast doubt on harm reduction strategies. One example is the

following, pulled from an original report published in 1994:

Various strategies have been implemented in an effort to preventand control HIV infection and AIDS among offenders. However,debate continues on the necessity for and effectiveness of any orall of these strategies. In fact, some government officials andcorrectional administrators insist that 'there is no problem,' that HIVinfection in correctional facilities 'has been blown out of proportion,and that if the situation is so bad, how come we don't have moreoffenders with AIDS in correctional facilities?' Unfortunately, stillothers seem to feel that offenders deserve whatever problems theyencounter. (CSC website, 2007, citing Pagliaro & Pagliaro, 1994)

The CSC goes on to quote yet again from the same article to drive home

the possibility that harm reduction programs are a waste of resources and

ineffective.

The actual use of condoms also presents problems in thecorrectional setting. It is highly unlikely that anal intercourse, whichis part of the social psychology of male dominance withincorrectional facilities... would be accompanied by the use of acondom.... supplying condoms to incarcerated offenders is notrecommended as an effective strategy for the prevention of HIVinfection. Providing sterile injection equipment has been [widelyused] in communities throughout Europe, and needle/syringeexchange programs have been implemented in several high-riskcommunity settings across Canada and the United States

14

(including Edmonton, Montreal and New York) with somepreliminary promising results. However, needle/ syringe exchangeprograms have also been strongly opposed, and their overalleffectiveness has been seriously questioned. (CSC website, 2007,citing Pagliaro & Pagliaro, 1994)

The overall impression that emerges from these CSC web pages is that

harm reduction programs are futile and deal with issues beyond CSC's control.

This seems to support CSC's lack of action in delivering comprehensive harm

reduction tools to Canadian prisoners. But, in fact, the complete article by

Pagliaro and Pagliaro is supportive of harm reduction measures. It has simply

been cherry-picked out of context, and their example of the existing irony

inherent in harm reduction programming is offered as scientific proof supporting

CSCs passive stance. This is an inexplicable contradiction that also

demonstrates the potential weakness of excluding grey literature from surveys of

existing opinions on the subject.

When an analysis of grey literature is included in a search for harm

reduction program delivery in prison, the difference is significant. The community

data illustrates a continuous struggle to garner internal support from CSC. There

are clear cases of prisoners who have been victimized by their advocacy efforts,

further penalized, segregated, and silenced during the early attempts to provide

prisoner-run programs (PASAN 1996, 1998). As well, CSC's own Correctional

Investigator has long recommended a needle-exchange and other harm

reduction measures (beginning in 1997), but this has been ignored by prison

administration (Senate Committee on Social Affairs, Science and Technology,

2005). Community organizations providing in/outreach support to prisoners report

15

many stonewalling, denied access, confiscation, and harassment from prison

staff when individuals have attempted to bring harm reduction materials as

innocuous as condoms, bleach, and lubricant into prisons (Lines, 2001).

The academic literature chosen to guide government policy directives on

harm reduction programs highlights vacillation in the decision-making process. In

a federal government inquiry into harm reduction, the Hon. David MacDonald

(chair) wrote that:

There was evidence that they [harm reduction tools] are not likely tobe effective in changing behaviour, and that they are not mandatoryor even pressed upon the inmates, although the prison settingwould allow for this. Dr. Hankins [an epidemiologist studyingHIV/AIDS in prisons] suggested those who attended optionalprograms might fear that other inmates would assume that theywere infected. In any case, in terms of anything but abstention fromall high risk behaviours, which is surely unlikely, informationprobably will not be of much use if inmates do not have the meansto act on it. Inmates told Dr. Hankins that education sessions aresimply frustrating. 'We get them all keen to protect themselves, andthen there are no means by which they can do so.'(ParliamentaryAd Hoc Committee on AIDS, 1990)

While CSC remains in a state of inertia on harm reduction, even some

conventional research results offer support for harm reduction measures-and

even in the form of official government advice, which makes CSC's position

appear all the more limited:

In order to further reduce HIV transmission ... the feasibility shouldbe explored of providing inmates with confidential access to cleanneedles and syringes through a one-for-one needle exchangeintended to reduce HIV transmission while not prompting drug use.(Health and Welfare Canada, 1991, 234)

Meanwhile, grey literature provides a compelling community and prisoner

perspective on the issue of harm reduction programs in prisons illustrating the

16

real consequences of this inertia. In December 2006, a column by Toronto's

Legal Network appeared on World AIDS Day (Mar, 2006) that explained the

crucial link between prisoners' health and public health and demanded the

implementation of safer tattooing parlours in all Canadian prisons. Sadly, the plea

fell on deaf ears. With little evidence to back its decision, the federal government

axed the pilot prison tattooing program established by the Correctional Service of

Canada (CSC). The government's cancellation came before all of the sites

finished their one-year trial period, and even before a final evaluation was made

public. The lost opportunity and its real cost to people's health inside prisons are

captured in the grey literature, particularly in Rick Lines' quintessential manual for

prisoner support workers "Pros and Cons". Here is the voice of one inmate:

CHARLIE: Needles are very hard to get. Usually when you get aneedle, it says "for one use only." I had a rig that I used every dayfor 3 months. I was a full-fledged junkie. If you're lucky enough toget a needle, the cost can range anywhere from $20 to a carton ofcigarettes. I myself have paid up to $50 just to get a rig. They'revery scarce.... In that situation, if you have HIV or AIDS and don'ttell anybody and then get found out, you're probably going to getstabbed or very severely beaten. When you are known to have HIV,it kind of slows down the line because nobody believes the bleachwill kill the virus, and no one wants to go after you. I don't know ifI'm supposed to say this, but I've had the odd staff member who'llbring me in a new fit, or a couple of new fits. In exchange I'd buyhim some cigarettes ... Nothing comes free. You have to pay for it.(Lines, 2001)

Clearly, the grey literature demonstrates significant issues with the

provision of harm reduction tools. Although policy exists to provide these

measures, the practice of consistent delivery is not followed. Conventional

literature claims that harm reduction programs have not really been shown to be

effective in changing behaviours, are costly to provide, and inherently create

17

safety concerns for correctional staff. CSC claims to perceive the benefits of

harm reduction programs without actually implementing recommended measures

proven through scientific research to be safe and effective. Grey literature

demonstrates the truth when it comes to infectious disease transmission in

Canadian prisons.

Segregation of prisoners with HIV/AIDS:

Conventional research literature from the U.S. provides ample information

on positive aspects of segregating prisoners living with HIV/AIDS. Benefits of

segregation include providing improved access to health care, supplemental

nutrition, and increased public safety. Claims of benefits abound in privatized

U.S. prisons especially, and these conveniently overlook the fact that if

segregation is required to provide care, then it's clearly not being provided for the

general prison population. Despite their official policy against segregation, the

CSC's website recently contained content that, once again, drew on conventional

research to support the idea of segregation of HIV-positive prisoners:

Segregation best serves HIV-infected offenders by placing them ina facility that recognizes and can better meet their physical andpsychological needs. It best serves non-infected offenders byprotecting them from HIV infection during their incarceration. It bestserves correctional staff by limiting the number of staff who havedirect contact with HIV-infected offenders to those who are awareof the risk and who have the education and training necessary totake appropriate precautions. Finally, segregation best serves thecommunity by helping to prevent the spread of HIV amongoffenders before they are paroled or released. (CSC website, 2007,citing Pagliaro & Pagliaro, 1994)

But contrary to these claims of safer, improved treatment of prisoners in

segregation, grey literature provides a glimpse into the atmosphere of

18

segregation, where prisoners in Canada die from a lack of basic medical

provision. To quote a prison chaplain, when notified of the death of a prisoner

with AIDS, he said that that person had been treated "like a dog in a back kennel"

(PASAN, no date b). After the public inquest into the death of the prisoner, who

was known to be a prison harm reduction advocate, five average community

members developed recommendations which mirror many of the programs the

AIDS movement has been demanding for years in Canadian prisons (PASAN, no

date, b).

Grey literature also provides evidence in the words of prisoners to support

the case against segregation. The Prisoners with HIV/AIDS Support Action

Network (PASAN) offers us prisoner's views on segregation and their treatment

in actual practice.

Prisoners have written to PASAN members detailing the abusesthey have suffered 'inside'. One prisoner writes: 'I've been isolatedfor no reason for seven months... The penal system seems moreinterested in persecuting me for my HIV-positive status thanattempting to reduce the spread of AIDS.' Another comments: ' Iwas put in the hole [segregation] because I have AIDS. When Icomplained in writing, they threw my complaints away. Then theythreatened me with further abuse if I didn't shut up.' An inmate fromanother institution describes how one isolated HIV-positive prisoneris often told by security staff: 'I'll be back in four hours to see ifyou're still alive.' (PASAN, no date a)

The paucity of evidence supporting segregation returned through

conventional literature search engines in itself bolsters grey literature claims of

human rights violations, public opinion against segregation, and abuse of power

by authority figures and government employees. Very little information leaks out

of the Canadian Correctional system regarding segregation because of the

19

concern over the system's public image. As shown, information on the esc

website portrays segregation as beneficial for prisoners, but that is clearly less

than half the story.

20

DISCUSSION:

It becomes clear that when grey literature is compared against The

conflicting evidence and contrary points of view demonstrated here surrounding

three topics related to prisoner health demonstrate the value of inclusion of grey

literature in forming a balanced portrayal of health conditions for HIV-positive

prisoners in Canada. Scientific studies obtained through the conventional search

presented factual evidence without explanation, and failed to take into account

contextual interactions and contingent features that lie outside data results. The

addition of grey literature adds the voice of the research subject to illuminate the

context and a historical foundation for these issues. This is compelling evidence

that should not be excluded from the opinion-forming process when developing

research questions. It makes sound professional sense for researchers to gather

all empirical information, not just scientific evidence from academic journals,

during this transfer of knowledge process.

Does the exclusion of grey literature result in under-formed opinions?

Exclusion is tantamount forming a narrow basis for new research questions.

When it becomes possible to uncover the root cause(s) of an issue of interest,

the impact of this knowledge must surely influence the formation of

theory/hypothesis by which to proceed. The portrayal in the conventional

research on prison health and HIV is one of a public health problem well

managed through present interventions, and of justification for human rights

21

violations based on staff safety concerns. Without the inclusion of grey literature

to provide atmospheric background, one's opinion becomes fundamentally

skewed. Grey literature demonstrates the severity of issues from the perspective

of the people affected by them and makes clear both the human impact of

minimal harm reduction programming and the fatal consequences of human

rights violations. In summary, the three examples selected for comparison

portrayal, the effect of inclusion of grey literature by topic can be summarized as

follows in figure 2.

22

Figure 2: Comparison Process

PUBMED searchAcademic Journals

Impression

Incidence/Prevalence- misleading calculation ofincidence/prevalence rates whichdownplay the severity of the issue

Harm Reduction- not really shown to be effective inchanging behaviours- costly to provide- safety concerns for staff,- claims of perceiving the benefitswithout implementation

Segregation- portrayed as beneficial- desirable- cost effective- safe for staff- staff safety given priority overprisoners

CHODARR searchGrey literature

Irnpression

1Incidence/Prevalence

- explanation of miscalculation of lowreported rates of HIV/AIDS- reasons for reluctance of prisonersto be tested and/or included in stats- justified fears for confidentiality ofHIV status

Harm Reduction- demonstrates the ignoranceand disregard for truth regardingeffectiveness, safety issues andbenefits to health outcomes,costs, and scope of the problem

Segregation-human rights violations- public opinion againstsegregation- abuse of power of authorityfigures and governmentemployees

23

Overall, the lack of comprehensive data on Canadian prisoners living with

HIV/AIDS limits this comparative analysis. Much of the conventional literature

search returned US/International weighted evidence. Very little Canadian

research information was available or cited, and in question is the very definition

of what is considered "empirical" evidence versus anecdotal evidence.

24

CONCLUSION:

This comparative analysis begs further questions: What are the

ramifications for research question development of including grey literature on a

wider public health basis? Are researchers currently forming well-rounded

opinions when developing research questions using exclusively conventional

literature search results? Are we remiss as researchers by not including the

influence of information that emerges from a subject perspective?

The results of an exclusively conventional literature search to determine

the necessity or feasibility of conducting research in the Canadian prison system

may well lead one to believe that there is only a relatively minor problem, one

that would be problematic to undertake, with very few subjects available for

sampling. In the larger context of public health research issues, this may

influence a decision to redirect valuable limited resources in another direction

where a perceived larger problem exists and results would be less problematic to

obtain.

While grey literature may be problematic to obtain, difficult with regards to

discerning it's reliability/accuracy, and non-scientific, it does provide illumination

through thick, descriptive portrayals of issues and raises areas to consider rather

than offer definitive answers. Reading between the lines, it becomes apparent

there is much added value in the inclusion of grey literature.

25

REFERENCES

Calzavara, L., Ramuscak, N., Burchell, A. N., Swantee, C., Myers, T., Ford, P.,Fearon, M., & Raymond, S. (2007). Prevalence of HIV and hepatitis Cvirus infections among inmates of Ontario remand facilities. Can MedAssoc J, 177(3), 252-256.

CHALN (Canadian HIV/AIDS Legal Network). (2005). Essential info about the200112002 edition of HIVIA IDS in prisons, info sheets 1-13. A publicationof the Canadian HIV/AIDS Legal Network.

CHODARR (Community Health Online Digital Archive Research Resource).(2007). Available from http://health.arts.sfu.ca/index.html

Dolan, K. (1997) Canadian HIV/AIDS Policy and Law Newsletter, 3(4).

Ford, P., White, C., Kaufmann, H., MacTavish, J., Pearson, M., Ford, S.,Sankar­Mistry, P. & Connop P. (1995). Voluntary anonymous linked study of theprevalence of HIV infection and hepatitis C among inmates in a Canadianfederal penitentiary for women. Can Med Assoc J, 153(11), 1605-1609.

Ford, P., & Wobeser, L. (2000). Health care problems in prisons. Can Med AssocJ, 162(5),664-5.

Greenhalgh, T, Robert, G., Macfarlane, F., Bate, P., & Kyriakidou, O. (2004).Diffusion of innovations in service organizations: Systematic review andrecommendations. Milbank Quarterly, 82(4), 581-629.

CSC website (Correctional Service of Canada). (2007). Just punishment?Accessed Sept. 30,2007, from:www.csc.scc.gc.ca/text/pblctlforum/e063/2063n_e.shtml

CSC (Correctional Service of Canada). (2003). Infectious diseases preventionand control in Canadian federal penitentiaries 2000-01.

Lines, R. (2001) Pros & cons: A guide to creating successful community-basedHIVIAIDS Programs for Prisoners. A publication of the Prisoners'HIV/AIDS Support Action Network.

Mar, L. (2006). Closing prison tattoo parlours can only cause infectious diseasesto spread beyond jails, warns Leon Mar. Toronto Star, Dec 1, A25.

Pagliaro L., & Pagliaro, A. (1994). Just punishment? HIV infection and AIDS incorrectional facilities. Forum on Corrections Research, 6(3), 40-43.

26

Parliamentary Ad Hoc Committee on AIDS. 1990. Confronting a Crisis: Report ofthe Parliamentary Ad Hoc Committee on AIDS.

PASAN (Prisoners' HIV/AIDS Support Action Network). No date a. Info Bulletin#5: HIVIAIDS and Prisoners: The Case Against Segregation. PASANNewsletters.

PASAN (Prisoners' HIV/AIDS Support Action Network). No date b. Info Bulletin#6: Like a Dog in a Back Kennel": Death Exposes Treatment of PrisonersLiving with HIVIA IDS. PASAN Newsletters.

Senate Committee on Social Affairs, Science and Technology. 2005.Proceedings. Issue 19, June 7. Available fromhttp://www.parl.gc.ca/38/1/parlbus/commbus/senate/Com-e/soci-e/1geva­e.htm?Language=E&Parl=38&Ses=1&comm_id=47

Rothon, D.A., Mathias, R.G. & Schechter, MT. (1994). Prevalence of HIVinfection in provincial prisons in B.C. Can Med Assoc J, 151(6).781-87.

Savoie, I., Helmer, D., Green, C.J. & Kazanjian, A. 2003. Beyond Medline:reducing bias through expanded systematic review search.lnt J TechnolAssess Health Care, 19(1), 168-78.

27