Inr Nursing Term Paper

Opinion Piece of International Interest

Creating academic structures to promote nursing's role in global health policy

Authors

  • S. Gimbel RN, MPH, PhD,

    Assistant Professor, Corresponding author
    • E-mail address: sgimbel@uw.edu
    1. Family and Child Nursing, School of Nursing, University of Washington, Seattle, WA, USA
    • Correspondence address: Sarah Gimbel, Department of Family Child Nursing, Center for Global Health Nursing, School of Nursing, University of Washington, Box 357262, Seattle, WA 98195, USA; Tel: (206)-616-5064; Fax: 206-543-3624; E-mail: sgimbel@uw.edu.

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  • P. Kohler RN, MPH, PhD,

    Co-Director, Assistant Professor
    1. Center for Global Health Nursing, School of Nursing, University of Washington, Seattle, WA, USA
    2. Department of Psychosocial and Community Health, School of Nursing, University of Washington, Seattle, WA, USA
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  • P. Mitchell RN, PhD, FAHA, FAAN,

    Executive Associate Dean
    1. Department of Bio-behavioral Nursing and Health Systems, School of Nursing, University of Washington, Seattle, WA, USA
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  • A. Emami RN, MSN, RNT, PhD, FAAN

    Robert G. and Jean A. Reid Executive Dean
    1. Department of Bio-behavioral Nursing and Health Systems, School of Nursing, University of Washington, Seattle, WA, USA
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  • Funding

    No funding contributed to development.

  • Conflict of Interest

    No conflict of interest has been declared by the authors.

Abstract

Aim

We highlight key components of emerging academic structures in global health nursing and explain how this investment can expand nursing's broader engagement in global health policy development.

Background

Engaging nursing in global health policy development is vital to ensure the scale-up of effective health programmes. Globally, nurses promote development of interprofessional healthcare teams who are responsible for translating sound global health policy and evidence-based programming into practice. However, the role of nurses within policy forums and on influential decision-making bodies within the global health space remains limited, which reinforces suboptimal global health policy implementation.

Introduction

Investment in globally engaged academic structures is an important way to expand participation of nursing in global health policy development.

Sources of evidence

A review of the current knowledge and substantive findings related to academic structures promoting global health nursing was conducted, and included a directed search of institutional websites, related grey and peer-reviewed literature, and communication with top-tier schools of nursing in the United States, to identify specific developments in global health nursing academic structures.

Discussion/Conclusion

Effective academic structures promoting global health nursing include a framework of four critical components – Research, Education, Policy and Partnership. Academic structure type and core activities vary depending on institutional priorities.

Implications for nursing, health and social policy

Increasingly, global health research, driven by individual nursing investigators, is expanding; however, in order to translate these advances into expanded involvement in global health policy development, academic structures within schools of nursing need to systematically expand educational opportunities, bolster research capacity and promote partnership with policymakers.

Background

Global health has been defined as an ‘area for practice, study, and research that places a priority on improving health, achieving equity in health for all people and ensuring health-promoting and sustainable sociocultural, political and economic systems’ (Koplan et al. 2009; Wilson et al. 2016). This multidisciplinary field synthesizes population-based prevention efforts and individual-level clinical care, and examines both drivers and solutions to health disparities (Koplan et al. 2009). To achieve the goals of global health, increasingly, funding agencies, such as the Robert Wood Johnson Foundation and others, are encouraging identification of promising global health approaches developed in low- and middle-income countries (LMIC) to test, spread and scale in the USA and other similarly, higher resourced settings. In general, both interest and funding support for global health have grown considerably over the last 25 years, in response to the establishment of global health benchmarks and dedicated funds from major stakeholders (Dieleman et al. 2016). Even the definition of global health is expanding in response to the growing awareness of the interconnectedness between our environment and human health – leading to the one health and planetary health research movements (Gostin & Friedman 2015; Whitmee et al. 2015).

Student interest in global health is also growing across universities, especially within the health sciences, where the increased interconnectedness of the world has made explicit the need for health equity and social justice worldwide to tackle the most intractable health challenges. To meet this need, schools of nursing (SoN) in the United States have expanded global health research and educational opportunities (Bailey & DiPietro Mager 2016; Global Forum on Innovation in Health Professional Education; Board on Global Health; Institute of Medicine; National Academies of Sciences, Engineering, and Medicine 2016; Oscadal et al. 2014). Well-developed programmes generally are moving beyond more introductory study tours, and are working to develop relevant degree programmes, pre- and postdoctoral fellowships, and research synergies between nursing and other disciplines. To better guide these advancements, global health competencies for health professionals, including nurses, have been proposed, and efforts to build strategic and sustainable partnerships are ongoing (Jogerst et al. 2015; Maier & Aiken 2016; Wilson et al. 2012). Comprehensive academic structures within SoN which effectively promote nursing's role in global health are critical to ensure that advancements in education, research and practice are translated into policy and real-world application, both locally and abroad.

Nursing scientists need structured and targeted support within their universities to be competitive in the current funding climate, and academic structures need to be strengthened to develop an effective pipeline to bring in new, global health nursing practitioners and scientists – from both LMIC and industrialized nations. Academic structures designed to meet these needs – and thus promote the participation of our profession which provides the vast majority of health care globally – are necessary to maximally utilize the tremendous investments in global health. (Bryar et al. 2012).

In this paper, we describe how academic structures that promote nursing engagement in global health research, education and policy are being organized within a sample of top-tier nursing schools in the United States. In addition, we discuss the importance of sustainable academic structures to promote global health nursing, specifically nursing engagement in global health policy, is discussed. Core components of these academic structures are described using a proposed Research, Education, Policy and Partnership (REPP) Framework with the organization and initial implementation of the University of Washington, School of Nursing's Center for Global Health Nursing (UW-SON CGHN) provided as an example.

Impetus for development of academic structures to promote nursing's role in global health

In 2010, the Lancet Commission on Education of Health Professionals for the 21st Century recognized the fundamental need for ‘robust, competent and professionally capable workforce’, and the incongruity between current health worker competencies and actual skills required in an increasingly global and interconnected world. The commission noted that although workforce shortages are recognized as a primary deterrent to improving health outcomes, the quality of the health workforce, specifically professionalism and leadership skills need to be addressed in order to make lasting, sustainable improvements in global health (Bhutta et al. 2010). Addressing these human resources for health challenges will be required to meet the 2030 Sustainable Development Goals (United Nations, 2015b).

Producing nursing cadres and other health professionals with the capacity to address existing and future global health challenges requires both instructional and institutional innovation. Within the field of nursing, this includes improving education and promoting policies which allow for expanded clinical scope of practice, especially in low-resourced, high-need settings (Institute of Medicine, 2010; Maier & Aiken 2016). Structures must also strengthen existing and new global health nursing science, support robust global health education for future nursing scientists and facilitate nurse involvement in the shaping of global health policy.

Nurses are the largest cadre of the global health workforce, providing 90% of health care worldwide (Bryar et al. 2012). Nursing scientists further contribute unique, frontline perspectives to produce innovative solutions to global health's most challenging problems. Task shifting/sharing, systems analysis, quality improvement, clinical training interventions and models of care delivery are a sample of innovations led by the nursing field. At the policy level, nursing certifications and regulatory bodies ensure quality care across heterogeneous sites (Blaauw et al. 2014; Dawson et al. 2015; Doherty & Coetzee 2005; Martinez-Gonzalez et al. 2015; McCarthy et al. 2013; Moraros et al. 2016; Willcox et al. 2015).

The role of nurses within policy forums and influential decision-making bodies within the global health space has been limited (World Health Organization, 2011). To increase participation of nurses in policy creation, the International Council of Nurses (ICN) recommended three key strategies: ‘coordinating nursing actions, maintaining solidarity with the profession and developing strong leadership’ (Benton 2012). Investing in academic structures is one important way to expand the effective participation of nursing in global health policy development.

Sustainable academic structures to promote global health nursing: research, education, policy and partnership

A review of existing global health programmes within top-tier United States SoN (Table 1), and a directed search of institutional websites, related grey and peer-reviewed literature, distilled four domains central to the promotion of global health within nursing academic institutions and formed the basis of the REPP framework (Fig. 1). Using the Research, Education, Policy and Partnership (REPP) framework, academic entities can ensure core areas are addressed when developing and implementing strategies to promote effective nurse participation in global health research, education and policy development through effective partnership. Investments in each of these four areas create a sustainable foundation which promotes engagement of a critical mass of global health nursing scientists and practitioners within academic institutions who are linked and mutually supporting. These university-level collaborative networks foster broader connections to similar national, regional and international nursing and non-nursing organizations engaged in promoting nursing's role in global health research and policy (IHI, 2003). Simultaneously fostering cross-disciplinary collaboration is key so nursing perspective is not siloed but rather intentionally included in both broader global health research and policy decision-making.

Johns Hopkins UniversityCenter for Global InitiativesInternational placements (service-learning, research training programmes, fellowships and practicums abroad), International Visiting Scholar Program, Consultation services for foreign schools of nursing, Coverdell fellows, key partner in the JHU Center for Global Health (collaboration between all of the JHU schools that harnesses the expertise of its dedicated health and medical professionals to address a myriad of global health challenges)Nursing Knowledge, Information Management and Sharing
University of PennsylvaniaOffice of Global HealthGlobal Women's health research centre, GHN minor, Coverdell fellows, study abroad, research partnerships, international visitorsNursing Midwifery and Leadership
University of California/San FranciscoCenter for Global HealthGHN fellowship, International collaborations/visitors, GHN minor, GHN Bootcamp, GHN clinical scholars 
Duke UniversityOffice of Global and Community Health InitiativesStudent global health and cultural immersion experiences, international and domestic consultation, global leadership services, technical assistance, international visiting research scholars for mentoring and developmental experiences 
University of WashingtonCenter for Global Health NursingDisseminate and promote GHN research, strategic partnerships in GHN domestically and internationally, expanded global health educational opportunities for students, promotion of nurses involvement in global health policyInterprofessional Education (application phase)
New York UniversityGlobal Research & Programs CollaborativePriority nursing centres in Rwanda, Liberia, Ghana, Tanzania and China. Links to NYU's degree-granting campuses at NYU Abu Dhabi and NYU Shanghai, as well as at NYU's 11 international academic centres for a variety of educational programmes. Ongoing research studies in Vietnam on tobacco use and sexual healthCare of Older Adults
University of Michigan/Ann ArborOffice of Global OutreachDisseminate and promote GHN research, strategic partnerships in GHN domestically and internationally, expanded global health educational opportunities for students including clinical and research placements, Coverdell fellows, international visiting scholars programme, undergraduate global health minor, graduate global health concentration optionResearch and Clinical Training in Health Promotion Nursing
Case Western Reserve UniversityNo formal structure outside of the WHO Collaborating CenterFaculty exchanges and visiting scholars programmes, study abroad, university-level graduate and undergraduate certificate in global healthEvidence-based Nursing Practice
Columbia UniversityGlobal InitiativePriority global nursing centres in Jordan & Kenya, Brazil and Chile in development, NGO support globally including Dominican Republic and Bangladesh, nurse capacity building via NGO, study abroad, international visitorsAdvanced Nursing Practice
Emory UniversityCenter for Global Health & Social ResponsibilityStudent exchanges (international and domestic, undergraduate/graduate), humanitarian coursework, global research 
University of Maryland-BaltimoreOffice of Global HealthResearch/educational strengthening partnerships for health systems strengthening (4 countries), global health certificate, international visitors and scholarsOccupational Health Nursing

Research

Academic structures must address current limitations in quantity and quality of nursing engagement in global health research through building links across academic, research, practice and policy domains (American Association of Colleges of Nursing, 2006; Institute of Medicine, 2010, Kurth et al. 2016). One mechanism of doing this is to facilitate multidisciplinary research through the development of academic infrastructure, such as centres of global health nursing. This will facilitate collaboration amongst like-minded researchers from nursing as well as across and beyond the university through joint identification of research synergies, fostering collaborative research ventures, and by promoting effective dissemination nurse-led global health research. Furthermore, administrative capacity to facilitate and support competitive global health grant submissions is needed - global health grants may be larger, involve partners in multiple countries and introduce new levels of complexity. Investments in supporting grant submissions, for training and/or recruitment of specialized staff, may be necessary. Finally, doctoral programmes must invest in the discipline of global health nursing research with a vision towards producing science which informs the broader global health policy arena. Investments such as development of international clinical placements, global health post-DNP fellowship programmes (in both domestic and international sites), expanded coursework in global health nursing (including development of certificates, minors and joint degree programmes with other relevant programmes), and support for faculty to develop robust global health nursing research portfolios which can provide global health-interested students opportunities for engagement will draw in the best, brightest and most engaged nursing faculty and students.

Education

Global health nursing education can prepare nurses at the undergraduate and graduate levels to provide clinical care in a competent, safe and culturally appropriate manner in a range of settings; however, viewing global health with only a clinical health lens can result in a narrow focus on the specific clinical problem (e.g. poor health, disease, pathology) without an understanding of the relevance and applicability of social justice, health equity and determinants of health to nursing practice (Archaumbault 2010; Kurth et al. 2016). By expanding the focus to include the origins of the global health issue (e.g. socio-economic, political elements), students are able to identify structural issues which underpin health and social inequity. To do so effectively, nurses require a broad understanding of globalization and the political economy of health, as well as a solid knowledge base in human rights and global health diplomacy.

Globally prepared nurses need to be aware of broader issues of health, equity and access, as well as versed in critical research and policies which guide global investments in health. Both undergraduate and graduate students must understand critical global health research, such as the Global Burden of Disease (Murray et al. 2012), and its applicability to practice, as well as be knowledgeable on core global health policies, such as the World Health Report (World Health Organization, 2013), the Sustainable Development Goals (United Nations, 2015a), and their relation to the aforementioned global health concepts. Considerable investment is needed to integrate global health into curriculum, as nationally less than half of SONs in the United States have done so (Wilson et al. 2012). Operationally, global examples and applications need to be mainstreamed into coursework at all levels and include relevant tools and frameworks which encourage practical and contextually appropriate applications within both local and international global health settings.

Nursing programmes typically include clinical experiences alongside didactic learning, much of which is mandated by relevant regulatory bodies. While this results in scheduling challenges, there are opportunities to add global health training and experiences. When students are able to draw parallels between the lives and health outcomes of their patients to the broader health system and sociopolitical environment, the impact and relevance of their work is bolstered. Building global perspective, through frameworks and case examples, as well as clinical opportunities (domestically and if feasible, internationally), both undergraduate and graduate nursing students are better able to participate in the policy arena.

Global health nursing certificates, minors, majors and joint degree programmes have been suggested. Synergies between nursing and other disciplines can also be fostered to promote interprofessional educational opportunities. These may include clinical rotations, fellowships or internships. Related coursework in leadership, management, policy analysis and communication skills need to be prioritized to ensure nurses graduate with the skills necessary to participate effectively in policy and other decision-making forums (Horton 2010). In summary, instructional and institutional design must be brought together to create a pipeline of nursing graduates capable of effectiveness in diverse contexts while also harnessing the power of ‘global pools and flows of knowledge and other resources’, recommended by the Lancet Commission on Education of Health Professionals for the 21st Century (Frenk et al. 2010).

Policy

Academic structures promoting global health nursing need to place strong emphasis on increasing nursing's role in global health policymaking in order to improve care of patient populations. Global health nursing should embrace and support globally recognized benchmarks, such as the Sustainable Development Goals, as well as promote policies which broaden nursing and other healthcare certification and regulatory standards both nationally and globally. Empowering nurses to be stronger patient advocates, rigorous scientists and activists at the global, national and local levels can ameliorate the lost investment and lost lives that result from nursing's exclusion at decision-making tables. Effective academic structures which promote global health nursing must heed calls to link with the International Council of Nurses (ICN), Sigma Theta Tau International (STTI) and others who have prioritized the need for institution strengthening globally through refining definitions of professional competencies, regulation of expanded scopes of practice and formalizing advanced practice education (Kurth et al. 2016). Understanding existing policies as well as gaps in the global health sphere is essential to ensure nursing research, education and practice priorities are translated into policy and positively influence health outcomes around the world.

Partnership

Critical nursing research, education and policy in the global health space will only be as successful as the partnerships which underpin them. Significant and successful investments in the United States have been made to better position nursing to meet healthcare needs since the publication of the 2011 Institute of Medicine (IOM) report, ‘The future of nursing: Leading change, advancing health’ (Institute of Medicine, 2010). Following that report, the Robert Wood Johnson Foundation funded partnerships between nurses, foundations and others key partners to implement recommendations from the report (Jellinek et al. 2015). Between 2006 and 2011, this investment aimed to increase engagement of nurses in U.S. health policy, providing $12.5 million in investment to 60+ organizations which was matched with $17.5 million from >250 local and regional funders. Building off of the IOM report recommendations, implementers developed innovative programmes collaboratively to achieve aims. In general, partnerships with fewer stated goals and those which engaged partners beyond nursing were more successful (Ladden et al. 2011). Similar investments by foundations and other stakeholder agencies to promote nursing engagement in global health policy making through designated academic structures would likely improve and expand the breadth and effectiveness of partnerships, leading to more impactful participation in research and policy.

Currently partnerships between SoN typically emanate from individual researchers’ collaborations. As such, they are driven by individuals or small groups and may not be sustained over the long term as priorities shift. As a result, SoN may find themselves with double-digit numbers of memoranda of understanding (MOU), many of which are inactive. Through the development of academic structures designed specifically to promote global health nursing, long-term, sustainable partnership priorities can be cultivated, including thematic areas of research and geographic foci. Partnership must be sustainable and reciprocal, and based on respect and prioritize diversity, equity, and inclusion that goes beyond individual interest and strives to mitigate risk of any kind of exploitation, superiority and unintentional oppression. These more intentional partnerships build a stronger foundation on which to ensure joint activities that are mutually beneficial. Targeting specific priorities and/or regions for partnership does not necessarily rule out new collaborations, but it does allow for rationalizing limited resources to mutually agreed upon priorities.

The REPP framework provides guidance on how to expand effective nurse engagement in research and policy, through academic structure building in four key areas: (i) support and expansion of nurse-led global health research; (ii) creation of educational programmes which effectively prepare students in global health nursing (including both local and international global health communities); (iii) active promotion of nurse involvement in global health policymaking bodies at the university, national, regional and international levels; and (iv) establishment of sustainable and mutually beneficial partnerships which intentionally target expanded opportunities for nurses from low- and middle-income countries (LMIC).

Examples of academic structures to promote global health nursing

Examples of academic structures to promote global health nursing at United States SoN are described in Table 1. There are different modalities employed depending on the scope, content and resources dedicated to the goal. The most common entities currently used by top-tier (as ranked by US News & World Report) SoN in the United States include research initiatives, centres or offices.

Initiatives are created to facilitate multidisciplinary research between different faculties and/or multi-university collaborations and provide research-related services to the academic nursing community. Centres are non-departmental academic or administrative units established for the purposes of facilitating collaborative research, strengthening interdisciplinary coursework, offering service learning opportunities and certificate programmes and providing external visibility for the nursing faculty within the university and beyond.

Offices are generally supportive units responsible for specific projects or programmes, which may include managing study abroad or contractual work or consultancies by specific faculty. In addition, a programme structure may be used when supporting a clearly defined academic programme such as a certificate.

Four SoN surveyed maintained a centre to manage and promote global health while another four use an office structure to organize activities. Universities with centres or offices usually also house a WHO collaborating centre, and those using the centre structure are more likely to base the WHO collaborating centre within the global health nursing centre. Both structure types house academic programmes such as study abroad, visiting scholars and certificates. Initiatives are generally broader in scope and link the school of nursing global health activities more formally to the broader university global health agenda, including ties to university-affiliated, non-governmental organizations. Centres and initiatives typically initiate with executive level support from the school, whereas offices tend to be maintained through external funding. Individual donor support via endowments and other mechanisms are critical for structure sustainability and improve impact.

Primary activities of these structures include opportunities for students and visiting scholars through coursework, certificates, minors, degree programmes, pre-/postdoctoral fellowships; global health research collaborations; and technical support or capacity building for global health programmes. To a lesser extent, some of these entities were actively engaged in policy development regarding global health nursing through linkages to larger nursing bodies, including the ICN, Sigma Theta Tau International (STTI), and the World Health Organization (WHO)/Pan American Health Organization (PAHO). Eight of these SoN are designated WHO/PAHO Collaborating Centers (either current or in the application phase). In addition, academic entities need to engage with curriculum development and thus ensure the broader global framework is weaved into all aspects of the educational pathway, rather than appended to the existing curriculum. All entities reported partnerships with international and domestic entities which define the geographic and programmatic foci of their global health nursing academic structure. The breadth of activities and the broader aims of the specific school of nursing inform how global health activities are organized within the respective universities.

University of Washington School of Nursing's Center for Global Health Nursing

The University of Washington, School of Nursing (UW-SON), provides an instructive example of institutional investment in development of academic structures to promote global health nursing. In response to growing interest and enthusiasm for global health from both nursing students and faculty, senior leadership of the UW-SON organized a collaborative engagement process over 18 months (March 2014 to September 2015) to define priorities and identify synergies with existing global health work at the UW-SON and other schools and departments. The overarching goal of the exercise was ‘to effectively pioneer and build capacity for appropriate and sustainable improvements in health and health care through innovative nursing science, education and practice across differing cultural contexts, both locally and abroad’(Kohler et al. 2015). At the completion of the internal and external processes, a summative white paper was written and consensus was reached to establish a global health nursing research centre.

The centre structure includes co-directors with complementary skill sets and a part-time centre administrative manager, supported through funds from the executive leadership of the UW-SON for an initial 3-year period. The Co-directors respond to the Executive Associate Dean. An executive advisory committee meets quarterly with the Center directors to contribute to the mission, vision and priorities of the centre. Members were selected based on current global health engagement and includes nursing and global health faculty. Representatives from other branches of the UW-SON are included to ensure ownership and engagement across the UW network.

Initial activities included mission and aims refinement, followed by short- and long-term priority activity plans. Outreach and engagement activities were carried out with departments, curriculum committees and other relevant entities within the UW-SON. Ongoing outreach was conducted with domestic and international global health partners, including ministries of health and SoN in low- and middle-income countries, prospective donor agencies, implementing organizations and others. Partnership selection criteria for external partners were developed to prioritize sustainable and mutually beneficial partnerships.

Moving forward

Academic structures like the UW-SON Center for Global Health Nursing have a unique opportunity to create environments which foster collaboration, build nursing capacity to participate and lead global health research and policy development while cultivating a pipeline of future global health nurse scientists. The aims of the centre are to (i) advocate for the role of nursing in global health, (ii) promote nursing research in global health, (iii) expand global health educational opportunities for nursing students, and (iv) establish sustainable partnerships. They mirror the domains of the REPP framework and provide a clear guide to the UW-SON moving forward.

As the core domains of research, education, and policy must be built upon strong, strategic and sustainable partnerships, ongoing outreach to partners, within and outside the university, is essential. Within the university, engagement with administrative components, to ensure global health research opportunities are supported and educational opportunities are feasible and synchronized with existing programmes, is a high priority. Likewise, discussions must continue across a broad range of disciplines – including environmental studies, engineering, anthropology, education, as well as other health sciences – in order to build a centre which effectively engages nursing within the University of Washington's larger population health initiative (Cauce 2016). The UW initial collaborations with centres and other departments have been forthcoming and productive: They participate in global health funding opportunities; collaborate in the development of global health certificate programmes; participate in university-wide leadership entities, such as the Office of Global Affairs Advisory Council; as well as target leadership positions on global health-affiliated centres’ board of directors.

Involvement with globally engaged nursing entities either within nursing bodies (ICN, STTI, ANAC, etc.) or within multidisciplinary entities (WHO/PAHO, Consortium for Universities in Global Health, APHA, etc.) are critical to expand our participation in the policy sphere. Defined academic structure is crucial, as it acts as a point of engagement for students, faculty and staff, prioritizes and develops educational opportunities for the school, brings together global health research synergies amongst faculty and students, and is mandated to work together with senior SON leadership to define global health nursing priorities moving forward.

Conclusion and implications for policy

The UW-SON CGHN is one example of a formal academic structure designed to effectively promote nursing engagement in global health policy development through explicit consideration of the four components of the REPP framework – research, education, policy and partnership. Without specific attention to these components within the academic setting, nursing's involvement in global health policy development will be compromised and the substantial investments in global health run the risk of being suboptimally utilized.

Acknowledgements

The authors would like to thank Kimberly Baltzell, Patricia Davidson, Jody Lori, Elizabeth Madigan, Yolanda Ogbolu, Teresa Pfaff, Allison Squires, Joachim Voss, Ann Williams and Belinda Wisdom for their contributions to this manuscript.

Author contributions

Altered by Editor: Study design: SG, PK, PM, AE Data collection: SG, PK Manuscript writing: SG Critical revisions of manuscript: PK, PM, AE

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Keywords

  • Global Health;
  • International Health;
  • Global Health Nursing;
  • Nursing Policy;
  • Policy Education;
  • Nursing Leadership;
  • Academic Structures

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Abstract

Background

Patients on oral anticoagulant therapy (OAT) require regular testing of the prothrombin time (PT) and the international normalised ratio (INR) to monitor their blood coagulation level to avoid complications of either over or under coagulation. PT/INR can be tested by a healthcare professional or by the patient. The latter mode of the testing is known as patient self-testing or home testing. The objective of this study was to elicit patients' perspectives and experiences regarding PT/INR self-testing using portable coagulometer devices.

Methods

Internet blog text mining was used to collect 246 blog postings by 108 patients, mainly from the USA and the UK. The content of these qualitative data were analysed using XSight and NVivo software packages.

Results

The key themes in relation to self-testing of OAT identified were as follows: Patient benefits reported were time saved, personal control, choice, travel reduction, cheaper testing, and peace of mind. Equipment issues included high costs, reliability, quality, and learning how to use the device. PT/INR issues focused on the frequency of testing, INR fluctuations and individual target (therapeutic) INR level. Other themes noted were INR testing at laboratories, the interactions with healthcare professionals in managing and testing OAT and insurance companies' involvement in acquiring the self-testing equipment. Social issues included the pain and stress of taking and testing for OAT.

Conclusions

Patients' blogs on PT/INR testing provide insightful information that can help in understanding the nature of the experiences and perspectives of patients on self-testing of OAT. The themes identified in this paper highlight the substantial complexities involved in self-testing programmes in the healthcare system. Thus, the issues elicited in this study are very valuable for all stakeholders involved in developing effective self-testing strategies in healthcare that are gaining considerable current momentum particularly for patients with chronic illness.

Background

The development of the effective empowerment of patients through "more rights and control over (their) health and care" has been strongly suggested in recent years [1], which could provide increased control and choice to patients regarding the selection of a particular therapy, and an appropriate healthcare setting as well as the use of a particular medical device technology. By these means, patients could take control of and manage some key health related issues themselves. These might include important aspects of self-caring, self-monitoring and self-management. For example, self-monitoring of oral anticoagulation therapy by patients themselves could lead to their greater independence with less inconvenience [2].

Anti-coagulant therapy

Oral anti-coagulant therapy (OAT) is indicated for several medical conditions such as atrial fibrillation (AFib), mechanical heart valve prostheses, deep vein thrombosis (DVT), pulmonary embolism (PE), and stroke [3]. It has however been particularly recommended for patients and especially the elderly who may have or be at risk of having a stroke or AFib, to prevent and treat thromboses [4]. The OAT has a narrow optimum range designed to prevent the major adverse health effects of both over- and under- coagulation; therefore, regular monitoring of OAT, both in terms of the dose and the frequency of administration, is required [5]. The monitoring of OAT is done by checking the prothrombin time (PT) and the international normalised ratio (INR) of the patient taking an oral anticoagulant. These two terms: PT and INR are important from the clinicians' and patients' perspectives because they show the blood coagulation level; therefore, they provide a measure of whether the blood coagulation level is stable (which is generally called the therapeutic or target level and thus is desirable) or variable (whether it has gone up or down with the extent of variation determining the need for medical intervention). Thus, it is important that the context of both PT and the INR terms be set out.

Prothrombin Time

The prothrombin time is the time taken, in seconds, for the patient's plasma to clot in an extrinsic pathway of coagulation, which is most commonly measured for monitoring OAT through warfarin for example [6]. The reference values for PT may vary between laboratories [7].

International Normalised Ratio

The World Health Organisation's expert committee on biological standardization [8] has defined the international normalised ratio through the following calculation:

INR = (PT patient/MNPT)ISI

Where PT patient is the PT for the patient's blood; MNPT is the mean normal prothrombin time (MNPT) of the healthy adult population, and ISI is the international sensitivity index (ISI) of the system [3].

An INR value of 1 is regarded as normal. Though a precise target INR value for each medical condition may be somewhat different, an overall target INR value of 2.5 is recommended for most medical conditions requiring OAT [5].

OAT monitoring

The PT and the INR of patients stable on OAT is usually checked at the healthcare facility by healthcare professionals or at home by the patient or by his/her care provider. Monitoring in hospitals is undertaken, usually in an anticoagulation clinic or in an haematology department, at 4-6 week intervals [5] while the frequency of monitoring of PT/INR at home may vary from one patient to another.

In the case of self-testing, the patient is informed by his/her general practitioner or the anticoagulation clinic doctor or nurse about the target therapeutic range of his/her (patient's) PT/INR. Consequently, the patient tests his/her PT/INR level and reports the results to his/her clinician, who interprets the PT and the INR values, adjusts the dose of the oral anticoagulant drugs, and informs the patient about the new dosage. Self-testing of the INR and the PT is performed with a hand held device known as coagulometer.

Coagulometers

Coagulometer devices are broadly divided into two categories i.e. monitors for patient self-testing, which are small, portable and require capillary whole blood taken by finger pricking, and monitors for professional use, which are large and multifunctional [4]. Generally the former type of monitors are intended for the patient's use (either by patients themselves or by their carers) while the latter type of monitors are intended for use by healthcare professionals such as haematology doctors and nurses in a primary, secondary or tertiary healthcare facility. At present, there are a number of commercially available coagulometers and some of them have been specifically evaluated in the UK [5] and a few types of coagulometer devices have been approved for home use in the USA [3].

Recently, there has been increase in the availability and use of coagulometer devices for testing the PT and the INR of patients taking oral anticoagulants such as warfarin [9]. These devices can be used in different settings (e.g. hospitals in both primary and secondary care), care homes, private homes and at any place) and by different types of users (e.g. healthcare professionals, patients and carers) [10]. However, the effectiveness of this type of device varies and depends on the user (operator), environment and circumstances in which they are used [11]. The settings in which the device is used and characteristics of users, particularly those of patients, may have important implications for the safe, effective and intended use of the device. This is because OAT is given in several medical conditions such as AFib, mechanical heart valve prostheses, DVT, PE, and stroke [3] The needs and requirements of such patients might be very different due to differences in not only in their medical conditions but differences in their age, gender, culture, skills, training, physical abilities, cognition and capabilities [12,13]. The study of the needs and requirements of different types of end users of coagulometer devices for home use would thus help in understanding various important issues with respect to self-testing of OAT.

The overall aim of this study was to elicit patients' perspectives and experiences on self-testing of PT/INR using portable coagulometer devices.

Methods

Blogs as a data source

The Internet, particularly in relation to blogs, has emerged as an important source of information on various issues relating to health, medical therapy and medical device technologies. 'Blog' is a shortened form of weblog, which stands for wee-blog, and is defined as a webpage that is regularly updated with postings by blogger(s) in a dated order [14,15]. Blogs can provide first person narratives from different communities such as patients and their lay carers who otherwise may be infrequently assessed through some conventional methods [16].

Through blogs, patients can share their experiences and exchange information with other people regarding various aspects of health and healthcare such as the illness, medication and medical devices that can be used for self-testing and diagnostic purposes [17].

Due to the valuable information available on patients' blogs, a number of studies have used patients' blogs as a primary source of data, mainly qualitative in nature, on patients' perspectives regarding different medical conditions. For example, studies have been undertaken of patients with Alzheimer's disease [18], with pro-anorexia [19,20], with sexual health problems [21] and with various types of cancers [22-24]. There are however both advantages and limitations in using the Internet as a source of data [24]. The advantages of using the Internet include it being an easy, quick and inexpensive tool for collecting actual primary research data, through online and email surveys [25], and the ability to compile already available data existing in different forms such as text, audios, videos, images and so on [20]. However, most bloggers use nicknames or remain anonymous, and whilst it is difficult to identify them personally, one of the strengths of the data from blogs is that the anonymity of the bloggers is normally assured [26]. Other advantages of using the Internet as a data source can include the greater protection of human subjects through the process of anonymity, and through these publicly available documents, the avoidance of the cumbersome and time-consuming process of acquiring formal ethical approval for involving patients in direct primary research [16]. This however does not mean that using data from the Internet is devoid of ethical considerations.

In fact, a number of ethical considerations concerning the reporting of data obtained from the Internet have already been discussed and reported at great length by others [27-29]. There is however a growing consensus among researchers that if Internet data is freely and publicly accessible then it can be used for considered research without prior approval [21,24]. On this premise, data taken from the Internet have in fact been widely used already [24].

We however acknowledge that there are a number of limitations of using the Internet blogs as a research data source. The limitations may include the use of the nicknames and a feigned identity, age, gender and place of location by the bloggers. This might be due to the fact that bloggers want to be especially certain of their anonymity [30,31]. It is therefore very difficult to verify bloggers' demographic details [32] and thus be able to compare findings with a comparative population sample. In addition, one may argue that the issue of biased sampling may arise in using Internet blogs because access to the Internet is not available universally across all ages, gender and social classes [33]. However, the digital divide is decreasing and the access to the Internet is increasing among increasing strata of the population, such as both young and old people, as well as men and women, especially in developed countries such as the United Kingdom (UK). For example, a recent survey of access to the Internet in the UK revealed that the Internet was used in the last three months by 79% of men and 75% of women of all ages including 72% of people aged 55-64 years and 32% of people aged ≥65 years [34]. The same survey reported that the Internet was used (almost) daily by 74% of 55-64 year-olds and 59% of those aged ≥65 years [34]. In addition, the Internet was used for social networking and blogging by 44% of men and 42% of women, including 19% of 55-64 year-olds and 8% of those ≥65 years [34]. Another important issue in analysing the Internet data from patients' perspectives is the difficulty in selecting 'real' patients, and identifying and excluding bloggers who may have a commercial interest for participating in blog discussions. For example, there is evidence that commercial companies are using blogs to elicit customers' views on their products [15,35]. In such a situation, a way forward may be the careful swotting of both very negative and very positive blog posts about the theme or the product (in our case a handheld medical device for self-testing of blood coagulation level). This is the approach we adopted in identifying what we considered to be a realistic picture of patients' views on the self-testing of blood coagulation levels through the Internet blog posts. Other limitations of data from blogs can be the arrangement of blog postings in chronological order rather than on the basis of the importance and content [36]; therefore, more relevant blog postings might not be retrievable easily. Sometimes, information provided in blogs can be erroneous and misleading [37], which can raise issues of the quality of blogs data [26]. Therefore, researcher(s) need to separate blogs containing factual information from those containing misleading information, which can be verified by a survey of the relevant academic literature beforehand.

Data collection procedure

Selection of blogs

The Google blogs search engine was used to find patients' blogs on self (home) PT/INR testing. The Google blog search was selected and used for a number of reasons. For example, it allowed facilities such as searching blogs and posts by title, by numbers of words, or at least one word, by the exact phrase, as well as by URL, authorship, language and date. A filtering facility for safe searching to avoid retrieving any malicious blog post or other material was also available.

Inclusion criteria

Blogs and blog postings written in the English language from January 2000 to October 2009 by any patient or lay carers were selected. Another criterion for the selection of blogs was that they should be currently active.

Exclusion criteria

Blogs and posts written and posted by people other than patients, such as manufacturers, clinics, healthcare professionals and others were excluded. Marketing articles or promotional materials regarding PT/INR testing were also excluded. No research studies based on primary and secondary research including randomised controlled trials and literature reviews were included. Blogs that were currently inactive were also not included.

Keywords

The following keywords and phrases were used to search the relevant blogs: INR, patient, anticoagulation, monitoring, self-testing, point of care testing, oral anticoagulant, home, warfarin therapy (Table ​1). These keywords were word searched using 'AND' and 'OR' connectors. The keywords were searched first in the blog title and then in the post title, followed by 'the exact phrase', and then 'with all of the words' and 'with at least one of the words' in the blog and the post. We did not search for blogs and posts written by any particular author; therefore, this option available in the Google blog search was left blank. We did not list blogs under specific URLs; thus, this option was also not used during searches.

Table 1

Keywords and search hit results using Google blog search

Search results

Searches of the aforementioned keywords resulted in 3653 hits (Table ​1). After deleting duplicates and irrelevant hits, 246 relevant blog postings that were posted by 108 patients, mainly from the USA and the UK, were collected from different blogs, mainly in discussion groups on PE, DVT, heart valve replacement (HVR) and PT/INR self-testing equipment.

A blog on PT/INR self-testing equipment provided 50 postings of which 12 were posted from January 2005 to August 2005 and 38 were posted from January 2008 to October 2009. A blog on HVR through different threads linked to the blog provided 111 posts between August 2005 and October 2005. A blog on home anticoagulation monitoring provided 12 posts uploaded from January 2009 to March 2009. A blog on pulmonary embolism contained 31 posts in two different threads i.e. 'PT/INR home test' had 25 posts placed from December 2008 to January 2009 and 'fluctuating INR' had six posts uploaded from January 2008 to September 2009. Another blog on home INR monitoring provided seven posts dated from March 2008 to April 2008. Thirty-five postings dated from February 2008 to January 2009 were collected from different threads to a blog on deep vein thrombosis. In total, 246 postings were collected from the six blogs.

Ethical issues

Blogs that we accessed were from open access sites and did not require any formal approval to access to the content of the postings available there; however, postings required registration to take part in the discussion and submit a post. As the content of these blogs was in the open public domain, we therefore did not seek any approval prior to accessing the content of these blogs, a strategy agreed by other academic researchers [24].

We collected textual data from the open access Internet blogs without the prior consent of the bloggers to study their viewpoint and experiences regarding self-testing of OAT. However, we obtained the ethics approval from the Research Ethics Committee at the Department of Information Systems and Computing at our University. The ethics committee advised us that the range of ethical implications were far more restricted compared to most patient based research because we were analysing information that was already placed in the public domain, which meant that the information being reported in this study was secondary data. The Research Ethics Committee however observed that the data should be reported anonymously. We have therefore reported the data anonymously and at the group level rather than at an individual level.

Data analysis

Qualitative research methods are required in situations that require in depth investigation and an understanding of process to determine the exact nature of the issue being investigated, especially when the data are available in non-numeric form e.g. through text or through visual means [38]. We undertook qualitative content analysis of the data, which we collected in text form from blog postings. Validation of qualitative content analysis can be achieved through using software packages [39]; in this case we used two software packages i.e. XSight version 2 ( trial version) and NVivo version 8 (http://www.qsrinternational.com) to analyse the data because qualitative data analysis cannot easily be undertaken using single piece of software [38]. Another advantage of computer assisted content analysis of textual data is the coding reliability that helps in generating comparable results [40]. The data analysis was undertaken in a number of stages. As a first step, all data from selected blogs were saved as html files along with the details (e.g. nicknames) of bloggers. In the second step, data from the html files were saved as a single file in Microsoft word. In the third step, all data were imported into NVivo software and the frequency of most commonly used words was ascertained after removing the details of bloggers, dates, numbers and the most commonly used English words. Thereafter, a word cloud of the most commonly used words in the blogs' text was created as shown in Figure ​1 (This was created in the Wordle - a Java applet, which is available at http://www.wordle.net/). This process helped us in identifying some key terms and themes relevant to blood coagulation testing as well as ensuring the suitability and relevance of the text of the blogs for the study objectives. In the fourth step, the text of all blog postings was read and issues such as the benefits, limitations, safety, training, cost, purchasing, maintenance and communications with healthcare providers were noted and a map of these issues (Figure ​2) was created in XSight software, which helped in categorising the findings of this study.

Figure 1

Most commonly used words in patients' blogs on self-testing of oral anticoagulation therapy.

Figure 2

Map of patients' perspectives on self-testing of oral anticoagulation therapy reported in patients' Internet blogs.

Results

The formal demographics, location and other details were not available for all bloggers from blog postings that were collected for this study; therefore, this information, helpful though it might have proved, is not reported here.

Qualitative analysis of the content of the collected blog postings resulted in the identification of seven themes, which, in no particular order, were on patient benefits, equipment related issues, managing PT/INR, laboratory testing, interaction with healthcare providers, insurance and social issues (Figure ​2). Findings for each of the themes are presented as follows.

Patient benefits

The benefits from self-testing were indicated to be time saved, travel reduction, personal control, choice and freedom, cheaper testing, and peace of mind. In reporting the benefits of having a self-testing coagulometer, one of the UK based participants wrote that the device would save his time as well as avoid a journey to the clinic for testing that he would not be able to make because of his ill health. He stated that it would also reduce the costs of the NHS (National Health Service - public sector healthcare providing service in the UK) due to fewer appointments. Reporting self-testing advantages such as cheaper testing and freedom of testing anywhere, a patient wrote that he has bought a self-testing device because he was going on holiday to a country where the cost of one PT/INR test was between £30 and £40.

A number of participants did not want to go to the hospital clinic for PT/INR testing for various reasons. For example, a female patient who did not like to travel to the clinic for testing wrote that she did not like going to see her doctor every other day therefore she would like to have a coagulometer and perform the PT/INR testing at home. Similarly, another patient, who had a HVR, wrote that if the opportunity were given then she would like to perform home testing compared to going every couple of weeks to a clinic for the testing because it was time consuming. A participant who was on heparin for a year wrote, "It would have been so useful to have a home machine, instead of having to visit the labs all the time." Another participant was interested in self-testing because she had to wait for at least two hours every week during testing at the clinic, which she did not like.

Given the freedom of self-testing with a portable coagulometer, a patient said that he wanted to buy the device because his INR could become suddenly very unstable and he could not get to the hospital because of ill health. In addition, this patient liked self-testing because it is undertaken by finger pricking and he disliked hospital based testing which requires drawing venous blood by needles, which he cannot handle.

A participant in favour of having a self-testing device wrote, "I can also check at any time, especially if feeling ill." Another wrote, "I was so excited to be doing home testing and having control of over this part at least." Given the possibility of self-testing over a longer period, a patient wrote that he had been performing self-testing for about two years. However, one of the participants was surprised to know about the possibility of self-testing. She wrote, 'I had no idea such a service (i.e. INR self-testing) was available."

One of the participants wrote that having a device is good value for money. Another patient believed that self-testing was the future. However, one of the participants wrote that she was thrilled on getting a device but became less confident after getting it.

Equipment issues

Issues raised relating to the PT/INR self-testing device were high cost, reliability and quality, calibration, lack of confidence in accuracy, different makes and models, places to buy devices, and training in how to use the device.

The most frequently cited issue in relation to the equipment was the cost of the device and the test strips that were needed. A number of participants wrote that the device was expensive. They even compared the cost of a coagulometer with a glucometer and said that the former was more expensive then the latter. A participant wrote that the device cost plus the maintenance cost was a lot to spend for a service which can be provided free by a community nurse visiting at home. Another participant wrote that when the device price comes down she would do self-testing. This showed that some patients might be interested in PT/INR self-testing but are held back due to the high cost of the equipment. Another participant wrote that the cost incurred on the device can be claimed back effectively through paying less tax and from an insurance claim. This might be context specific, in that these points are more particular to individual healthcare systems funded in different ways, such as that in the USA compared to the UK. Regarding test strips, a participant said that he could get the strips though a clinician's prescription, while another participant wrote that he was waiting to hear from his doctor about the test strips, which he thought were very expensive.

A number of participants wrote that home testing was more expensive than the alternatives. One of them said that the cost of single home test would be about US$ 9.00 and another wrote that the cost of self-testing could be high depending on the frequency of testing.

One participant wrote that he has a second hand device, which he bought at half price. However, there was no discussion on the performance and reliability issues in using a second hand device. Nonetheless, in raising the issues of the reliability of self-testing devices, one of the participants asked whether there was any accuracy problem.

A few participants wrote that the devices need to be calibrated and one takes his device to the laboratory for checking every six months. Another wrote that he took his device to his cardiologist's office and they took several weeks to get it right.

One of the participants asked 'is there only one manufacture making them?" A few participants replied and some said there was only one manufacturer and others said there were a number of the manufacturers. A participant asked, "What is the best brand/model to use?" In response to this question, the names of a few makes/models were mentioned. One of the participants wanted to know where one could buy the best device. A few participants replied that they bought the devices directly from the manufacturers.

Training

Regarding training in how to use an INR testing device and how to perform a test, one of the participants wrote that he had some literature and a demonstration video but he thought he still needed further training, which was going to cost him about £120, though this was less than his anticoagulation clinic would charge. Another participant wrote that training is provided; however, the details of the training provider were not mentioned. Nevertheless, a patient wrote "absolutely brilliant and easy" about the use of the device. A female participant however said that she does not have confidence in the results of home testing because the results were different from laboratory results.

Laboratory testing

A few participants wrote about their experience of INR testing at hospital clinics and laboratories. One participant who attended an anticoagulation clinic wrote, "I ... hated it.....Also had to wait at least 2 hours to be seen every week." Another wrote that having INR test at a lab was inconvenient as well as costly. The same participant also mentioned that getting feedback from the lab about what to do next was also difficult. A participant wrote on his frustration about the cancellation of his lab test appointment, changes in testing frequency and anticoagulant dose as well as getting a new appointment and medication and contacting the doctors, the pharmacy and the laboratory.

However, some of the participants were in favour of INR testing at a lab as one participant wrote that having INR tested at the lab is advantageous because they control many more variables - which were however not described. One patient wrote that the results of INR testing by herself were about 0.4 higher compared to the lab results. The same participant also wrote that INR test results vary between laboratories. Patients compared PT/INR results of self-testing with laboratory based testing. In this regard, a participant wrote that soon after having an INR tested at the lab he performed self-testing to check the accuracy between the two.

Managing PT/INR

Issues in managing PT/INR comprised the frequency of testing, fluctuations and the target (therapeutic) INR level and communicating INR self-test results.

Testing frequency

A female participant with a HVR wrote that she was testing every week at home and every three weeks at laboratory. While another patient said, "I won't be testing daily - probably 1-2/week may be spaced out further if I ever get my levels stable." A patient who had PE wrote that her PT/INR was tested twice a week while the other patient suffering from same medical condition was going to the clinic in the next four weeks for the testing. A male participant with DVT was tired of weekly testing. He wrote, "Next INR test in two week, finally! Nuff of this once a week test." Conversely, a participant wanted to test more frequently but her clinic did not want her to do that. On this situation, she wrote, "I get tested once a week, and I have had nurses/doctors tell me I can wait btwn (between) 2-4 wks (weeks) to test again, but I don't feel comfortable."

INR Level

Participants exchanged their views on normal and individual therapeutic levels of the INR. One of them wrote, "I think 'normal' is 1." Another wrote that the range of his INR was 2-3. A male participant with PE wrote that the therapeutic rage of his INR has to be between 2.5 and 3.5 but it had never been at the required level in the last 13 months. While another participant wrote, "I am almost always in 2-3 range."

Writing on fluctuations in the INR level, a participant wrote "I have noticed that the first (test) of spring or fall - it tends to go up to high or down to low." Participants wrote about the effect of diet especially green salads, vegetables high in vitamin K and the wine on the INR level. Given frequent fluctuations and INR levels up to 4.6, one participant wrote, "I'm wondering if it wouldn't be a good idea to have a home testing machine."

In addition, participants wrote about oral anticoagulants dosage adjustment in the light of INR fluctuations. One of the participants was unable to determine how to adjust Warfarin dosage. On this situation, a participant wrote, "They (anticoagulation clinic) adjust the dosage if INR was high or low" and another suggested that, "Dosing is based on the lab results."

Communicating INR results

A participant wrote that, "My clinic calls me and reminds me to take my INR test the day before it is due". He further wrote that after performing a home test, "I call them (anticoagulation clinic) back with the results the following day." Another female patient with HVR wrote that she keeps her cardiologist's office updated with home PT/INR test results. While a participant wrote that, she informs her clinic about home test results only when the readings change so that they can adjust the dose. Regarding keeping a record of self-testing results, a participant wrote that she maintains a diary as a memento.

Interaction with healthcare providers

With regard to difficulty in communicating with doctors in managing and testing OAT, a participant suggested that patients do not deserve extreme stress and they can change the doctors if they are not communicating well. In addition, some of the participants wrote that they feel nervous when they have an appointment with their haematologist or doctor.

Insurance issues

Patients exchanged views on the difficulty in interactions with insurance companies', especially in acquiring the self-testing equipment for themselves (patients). Some of the participants reported a long waiting time in getting a device through their insurance provider. A number of patients reported that their insurance covers purchase of a testing device and the test strip, which was however not universal but dependent on the patient's medical condition. However, some of the participants were not knowledgeable about this issue such as a patient with HVR asked, "Does your center promote the use of these (self-testing devices) for prosthetic valve patients? I was approved because of my valve."

Other issues

Blogs participants discussed on some other issues such as their main illness and co-morbidities, anticoagulant drugs, social and psychological issues as follows.

Primary medical conditions and co-morbidities

Participants informed each other about the disease(s) that they had. A male participant wrote, "I have afib (Atrial fibrillation)." Another wrote, "I too am living with AFib." The same patient wrote, 'I am on Coumadin secondary to atrial fib/flutter and prosthetic valve." One of them wrote, "I had a Mechanical Mitral Valve implanted a couple of years ago." A male participant who went to a hospital due to back pain, which he described as nasty, wrote, "That's when I discovered my PE (pulmonary embolism)." A female participant wrote, "I'm glad I at least know what caused my DVT and how to manage it now/prevent another." Some of the participants had more than one disease as one of them wrote that she was hospitalised for a PE but also had liver and kidney problems.

Anticoagulants

Participants exchanged views on various types of anticoagulant drugs and their dosage. A patient having a PE wrote that the dose of her anticoagulation therapy had tripled in 3 months. While another participant said that, she had stopped taking an anticoagulant drug and her INR level dropped to 1.5, which according to her was below her therapeutic range of 2. Consequently, she was worried and asked other participants whether this fall in the INR was OK! One of the participants replied that the drug would not raise the INR but it would be better to talk to the doctor.

Given the possibility of being on anticoagulant therapy for life, a participant was frustrated and wrote, "I am on Warfarin (Coumadin) for life. Does it make some sense?" One of the participants replied that extra precautions were required while taking it. Another participant wrote that one of his friends had been taking this drug for the last ten years and monitoring the INR and had no problems; however, he cautioned that the drug needs close attention. One of them wrote that patients who are sensitive to the oral anticoagulants for example Warfarin, might be given other anticoagulants such as Heparin. In addition, a participant wrote that she has heard about a new drug in the market that requires less monitoring. The name of the new drug was however not reported.

Social and psychological issues

The participants raised a number of social and psychological issues. For example the pain, the stress, distress and disappointment that they faced during PT/INR self-testing, taking anticoagulant drugs, acquiring a coagulometer device, visiting an anticoagulation clinic/laboratory as well as communicating with their doctors, nurses, pharmacists and the insurance companies in relation to their anticoagulant therapy and its monitoring. A participant wrote that she felt her whole body was clotted after taking on oral anticoagulants. Another patient with PE wrote that sometimes she feels severe pain that makes her extremely nervous. A number of participants wrote that they can bear a finger pricking but they do not like needles for drawing their blood for INR testing.

Some participants showed their frustration with the possibility of taking OAT for life. A participant with PE was afraid and scared of a higher or lower level of his INR and wrote, "This has been a very scary experience no doubt!" A few of the participants with PE sometimes felt severe pain that made them extremely nervous; hence, they wanted to know more about the origin of the PE and the reasons behind the severe pain. One of them having PE and DVT wrote, "I've had some really weird and sharp pains. Not lasting very long though but it's quite scary."

Participants in blogs felt joy in sharing the experience and communicating with others bloggers. One of them wrote, "I am so glad to find this... and talk to others who have been through it. I have been solo for 2 years." In addition, they shared other social issues such as travelling abroad and the joy of visiting new places despite having health problems. They provided encouragement and advised each other to relax to avoid the stress, due to the illness, that might make the things worse. In addition, they appreciated each other such as a participant wrote, "Thanks for the advice and support."

Discussion

The Internet in general and social media sites such as blogs in particular are increasingly becoming areas of academic interest because expressions of personal views and thoughts on key themes can be analysed by increasingly sophisticated methods. The Internet has provided a formal voice to those who may otherwise be unheard, or only heard locally. In addition, most of the people who have access to the Internet use it for either gaining information or exchanging their experiences on a wide range of issues such as healthcare and medical device technologies. Whilst there are always issues of representativeness in analysing such material the increasing ubiquity and availability of this medium to many, increases the opportunity for more widely applicable findings. It should also be noted in particular that those who may be disadvantaged by other means of social communication, through illness or disability, find considerable advantages in the use of such media.

The novelty of this study is that it focuses on the patients in relation to PT/INR self-testing whereas previous studies, discussed below, were focused on the device usability and reliability and the cost-effectiveness of self-testing compared to laboratory testing of PT/INR. This study has reported qualitative analysis of patients' experiences and opinions as revealed in their own narratives expressed, without any interference from the researcher, in the form of weblog postings regarding self-testing, also known as home testing, of OAT.

Generally, results show that the blogging patients shared their experience of PT/INR testing mainly in two biggest healthcare systems i.e. the US healthcare system and the NHS in the UK.

The findings reveal that the users, through their comments, see a number of advantages in the self-testing of OAT such as the saving of time, reducing travel, and reducing other costs involved in visiting health facilities for PT/INR testing; increasing control over their personal health and enhancing personal choice in the selection of the mode of the testing. This is in line with what has already been reported in the literature using a range of other methods. For example, patient self-monitoring provides independence and convenience to patients [2]. The advantages of PT/INR self-monitoring overall are often seen as including improving healthcare resource allocation by freeing time for both physicians and laboratory personnel and better management of OAT; thus, reducing chances of the complications directly associated with being outside the standard therapeutic range [3].

However, self-testing could not be undertaken by every patient on OAT but only by a tiny minority of patients [2], who qualify for the formal professional standards required to allow them to proceed to self-testing [41]. Even for those who qualify for self-testing there are requirements for training and quality control [3] as well as more generally encouragement, self-motivation to ensure adherence to protocols. Otherwise, patients might stop undertaking self-testing, which, amongst other consequences, would lead to a loss of the investment in the testing equipment and training. Whilst training may be provided in the form of a demonstration for several minutes, this might not be enough for some patients as indicated in the blogs' postings reported in this paper. Therefore, as indicated in other studies, patients need proper training both theoretical and practical to ensure the safety and effectiveness of the testing regime [5], which would almost certainly require standardized and monitored training procedures [2].

There are no exact figures of the numbers of patients undertaking self-monitoring of their INR. There are however consistent anecdotal reports that only 1-2% of people on OAT may be using coagulometers for INR self-testing, despite many attempts by manufacturers and a number of clinical centres to encourage their use. This relatively low acceptance and use of the devices by their intended patient users may be due to various reasons. As revealed from the patients' blogs reported in this paper, a major barrier to the uptake of PT/INR self-testing is the cost of both the device and testing strips [2].

Another factor limiting PT/INR self-testing could be the availability of a free home testing service undertaken by a community nurse in certain countries or areas within countries, as reported in the blogs analysed in this study. This however is more likely to occur where healthcare as a whole is provided free at the point of delivery such as through the NHS in the UK but this might not hold in other cases. The general lack of formal evidence of clinical safety and the effectiveness of patient self-testing compared to professional testing could be another limiting factor in the extension of self-testing [2]. This is likely to be compounded by the extensive and often well-developed infrastructure of hospital or clinical testing which, in some respects, self-testing may be seen as undermining, or indeed be being undertaken largely outside the monitoring or control of that infrastructure.

It was interesting to note that blogs' participants did not raise any issues relating to the design and usability of the device and test strips as well as errors or other problems encountered during PT/INR self-testing. It might be possible that the participants who used the equipment never encountered such problems or these issues were not raised on blog discussion boards. In this regard, a possible alternative explanation could be that these issues are already well addressed by the manufacturers before the equipment is deployed in the market.

Though reliable self-monitoring devices are available, there is an urgent need for agreed and widely available quality assurance mechanisms for self-monitoring [2]. In addition, there is a need to control pre analytical errors which occur in PT/INR monitoring at both home and the hospital [3]; otherwise patients might stop self-testing for economic, social and psychological reasons. Another issue that patients raised in their blogs was the availability of technical services for self-testing device calibration, which should be timely, regularly and standardised to ensure safety and confidence in the equipment both by patients and by those professionally monitoring device use [42].

According to Yang et al [3], manufacturers are responsible for device calibration because they control device calibration protocols [43]. However, patients' blogs show that they have been contacting their healthcare providers for the device calibration, where manufacturers have been less active or available in this respect. Therefore, patients show in the blogs that they need to know clearly whom to contact for device calibration, in particular through determining the roles of healthcare provider and device manufacturer, as determining who should bear the costs associated with the role.

Research studies have shown mixed findings in relation to the cost effectiveness of monitoring oral coagulations [44]. Lafata et al [45] have reported that patient self-monitoring (PSM) is not cost effective compared to health professional monitoring (HPM) while Taborski et al [46], Cheung et al [47] and Regier et al [48] reported that PSM is indeed more cost effective than the HPM. Overall, it is clear that further research needs to be undertaken on this issue to determine finally, what the position is. However, this study has demonstrated several reasons why there are likely to be continuing debates about the cost effectiveness of self-testing of oral coagulations. The issues of selecting and training patients as well as maintaining devices are critical [2,49]. Personal as well as social factors are similarly important, and what stands out from the data is that the notion of an entirely self-contained process of self-testing, where contact with manufacturers or healthcare system is minimal, is unlikely to materialise. From the patient blogs it is evident that very frequently there is the need for training (and retraining), monitoring, calibration, assessment or reassurance at all stages of self-testing particularly where a failure in any one of these areas could have damaging, if not fatal consequences for patients.

Limitations of this study design

The authors recognise limitations of extracting information from blogs and using it for the academic research. The research design applied in this study used a set of key words to identify a suitable sample of blogs to collect the required data. In doing so, some relevant blogs might have been missed as well as some important issues regarding self-testing of OAT might have not been discovered through this study design. Therefore, in depth information about self-testing of OAT can be collected through other research designs such as the in-person interviews of an appropriate sample of patients. Moreover, another limitation of blogs is a lack of complete demographic details of bloggers, as reported in this study. Therefore, findings of this study may be interpreted cautiously and no attempt should be made to generalise these findings. However, the findings of this study can be recognised as an exploratory work, which can help in planning further studies as mentioned earlier.

Conclusions

As indicated in this paper, INR testing currently involves a very large number of patients. Many of these patients are older, not least because the conditions, which result in the need for anticoagulation therapy as well as the associated INR testing, occur far more frequently with age. Formal healthcare resources needed for the continuing care of such patients are substantial. Thus, self-testing of INR levels should, in principle, substantially reduce these dedicated resources. Indeed, this argument is frequently the basis on which both manufacturers of self-testing devices as well as those concerned with the deployment of healthcare resources suggest the value of self-testing could be measured. However, this study, whilst primarily qualitative rather than quantitative in nature, suggests that the complexities of developing an effective self-testing programme are substantial.

Whilst it may be argued, rightly, that the analysis of Internet blogs is a problematic methodological endeavour for charting the exact dimensions of the issues in developing self-testing programmes, the data suggest the very wide range of issues that from a patient's point of view may determine their initial or continuing use of self-testing. Of course, some of these issues are very healthcare system specific, in this case, largely conditioned by the very different systems in the US and the UK. However, what is more surprising is the commonality of concerns, which seem to operate, almost independent of the healthcare system itself. As at a fundamental level for patients on anticoagulation therapy INR testing IS a matter of life or death (for too little or too much anticoagulation therapy may result in fatal consequences), many of the issues raised have this point at their core. Self-testing can be liberating from the drudgery of operating only with the pattern of (often poor or inconvenient) service provided by the healthcare system, as some bloggers have indicated, but, at the same time, there are frequently concerns about the effectiveness, reliability and use of self-testing equipment. Moreover, as appears to be indicated above, such concerns may not only be expressed by patients but also by healthcare professionals.

Whilst being very conscious of issues of the exact representativeness of those who choose to blog, as in the case of this paper, there is evidence from other studies to suggest that the range of issues covered in the blogs is sufficiently broad and all-embracing to give a consistent and clear picture of the extent of those issues, which are exercising 'self-testers'. In this respect, analysing such blogs may prove to be a useful first step in the preparation of more detailed face-to-face studies in this area, particularly where an analysis of such blogs proves both congruent and complementary to other studies using different methods.

Competing interests

The authors declare that they have no competing interests.

Authors' contributions

Both authors conceived the study, and participated in its design. SGSS collected and analysed the data and drafted the manuscript. IR guided the study, reviewed, and revised the manuscript. Both authors read and approved the final manuscript.

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