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1.  In search of attachment: a qualitative study of chronically ill women transitioning between family physicians in rural Ontario, Canada 
BMC Family Practice  2012;13:125.
Background
Most Canadians receive basic health services from a family physician and these physicians are particularly critical in the management of chronic disease. Canada, however, has an endemic shortage of family physicians. Physician shortages and turnover are particularly acute in rural regions, leaving their residents at risk of needing to transition between family physicians. The knowledge base about how patients manage transitioning in a climate of scarcity remains nascent. The purpose of this study is to explore the experience of transitioning for chronically ill, rurally situated Canadian women to provide insight into if and how the system supports transitioning patients and to identify opportunities for enhancing that support.
Methods
Chronically ill women managing rheumatic diseases residing in two rural counties in the province of Ontario were recruited to participate in face-to-face, semi-structured interviews. Interview transcripts were analysed thematically to identify emergent themes associated with the transitioning experience.
Results
Seventeen women participated in this study. Ten had experienced transitioning and four with long-standing family physicians anticipated doing so soon. The remaining three expressed concerns about transitioning. Thematic analysis revealed the presence of a transitioning trajectory with three phases. The detachment phase focused on activities related to the termination of a physician-patient relationship, including haphazard notification tactics and the absence of referrals to replacement physicians. For those unable to immediately find a new doctor, there was a phase of unattachment during which patients had to improvise ways to receive care from alternative providers or walk-in clinics. The final phase, attachment, was characterized by acceptance into the practice of a new family physician.
Conclusions
Participants often found transitioning challenging, largely due to perceived gaps in support from the health care system. Barriers to a smooth transition included inadequate notification procedures, lack of formal assistance finding new physicians, and unsatisfactory experiences seeking care during unattachment. The participants’ accounts reveal opportunities for a stronger system presence during transition and a need for further research into alternative models of primary care delivery.
doi:10.1186/1471-2296-13-125
PMCID: PMC3548744  PMID: 23259681
Family medicine; Canada; Unattached patients; Continuity; Attachment; Rural
2.  "Seeing a doctor is just like having a date": a qualitative study on doctor shopping among overactive bladder patients in Hong Kong 
BMC Family Practice  2014;15:27.
Background
Although having a regular primary care provider is noted to be beneficial to health, doctor shopping has been documented as a common treatment seeking behavior among chronically ill patients in different countries. However, little research has been conducted into the reasons behind doctor shopping behavior among patients with overactive bladder, and even less into how this behavior relates to these patients’ illness and social experiences, perceptions, and cultural practices. Therefore, this study examines overactive bladder patients to investigate the reasons behind doctor shopping behavior.
Methods
My study takes a qualitative approach, conducting 30 semi-structured individual interviews, with 30 overactive bladder patients in Hong Kong.
Results
My study found six primary themes that influenced doctor shopping behavior: lack of perceived need, convenience, work-provided medical insurance, unpleasant experiences with doctors, searching for a match doctor, and switching between biomedicine and traditional Chinese medicine. Besides the perceptual factors, participants’ social environment, illness experiences, personal cultural preference, and cultural beliefs also intertwined to generate their doctor shopping behavior. Due to the low perceived need for a regular personal primary care physician, environmental factors such as time, locational convenience, and work-provided medical insurance became decisive in doctor shopping behavior. Patients’ unpleasant illness experiences, stemming from a lack of understanding among many primary care doctors about overactive bladder, contributed to participants’ sense of mismatch with these doctors, which induced them to shop for another doctor.
Conclusions
Overactive bladder is a chronic bladder condition with very limited treatment outcome. Although patients with overactive bladder often require specialty urology treatment, it is usually beneficial for the patients to receive continuous, coordinated, comprehensive, and patient-centered support from their primary care providers. Primary care doctors’ understanding on patients with overactive bladder with empathetic attitudes is important to reduce the motivations of doctor shopping behavior among these patients.
doi:10.1186/1471-2296-15-27
PMCID: PMC3936809  PMID: 24502367
Hong Kong; Doctor shopping; Perceptions; Social environment; Illness and treatment experiences; Personal cultural preference; Cultural beliefs; Overactive bladder patients
3.  Canadian family doctors’ roles and responsibilities toward outbound medical tourists 
Canadian Family Physician  2013;59(12):1314-1319.
Abstract
Objective
To explore how Canadian family doctors understand their roles and responsibilities toward patients who seek health care abroad.
Design
Six focus groups were held with family doctors across British Columbia to explore their experiences with and perspectives on outbound medical tourism. Focus groups were digitally recorded, transcribed, and subsequently thematically coded to discover common issues and themes across the entire data set.
Setting
Focus groups were held with family doctors in 6 cities in British Columbia that provided representation from all provincial health authorities and a range of urban contexts.
Participants
A total of 22 currently practising family doctors participated across the 6 focus groups, with groups ranging in size from 2 to 6 participants (average 4 participants).
Methods
Thematic analysis of the transcripts identified cross-cutting themes that emerged across the 6 focus groups.
Main findings
Participants reported that medical tourism threatened patients’ continuity of care. Informational continuity is disrupted before patients go abroad because patients regularly omit family doctors from preoperative planning and upon return home when patients lack complete or translated medical reports. Participants believed that their responsibilities to patients resumed once the patients had returned home from care abroad, but were worried about not being able to provide adequate follow-up care. Participants were also concerned about bearing legal liability toward patients should they be asked to clinically support treatments started abroad.
Conclusion
Medical tourism poses challenges to Canadian family doctors when trying to reconcile their traditional roles and responsibilities with the novel demands of private out-of-country care pursued by their patients. Guidance from professional bodies regarding physicians’ responsibilities to Canadian medical tourists is currently lacking. Developing these supports would help address challenges faced in clinical practice.
PMCID: PMC3860932  PMID: 24336547
4.  HIV, Gender, Race, Sexual Orientation, and Sex Work: A Qualitative Study of Intersectional Stigma Experienced by HIV-Positive Women in Ontario, Canada 
PLoS Medicine  2011;8(11):e1001124.
Mona Loutfy and colleagues used focus groups to examine experiences of stigma and coping strategies among HIV-positive women in Ontario, Canada.
Background
HIV infection rates are increasing among marginalized women in Ontario, Canada. HIV-related stigma, a principal factor contributing to the global HIV epidemic, interacts with structural inequities such as racism, sexism, and homophobia. The study objective was to explore experiences of stigma and coping strategies among HIV-positive women in Ontario, Canada.
Methods and Findings
We conducted a community-based qualitative investigation using focus groups to understand experiences of stigma and discrimination and coping methods among HIV-positive women from marginalized communities. We conducted 15 focus groups with HIV-positive women in five cities across Ontario, Canada. Data were analyzed using thematic analysis to enhance understanding of the lived experiences of diverse HIV-positive women. Focus group participants (n = 104; mean age = 38 years; 69% ethnic minority; 23% lesbian/bisexual; 22% transgender) described stigma/discrimination and coping across micro (intra/interpersonal), meso (social/community), and macro (organizational/political) realms. Participants across focus groups attributed experiences of stigma and discrimination to: HIV-related stigma, sexism and gender discrimination, racism, homophobia and transphobia, and involvement in sex work. Coping strategies included resilience (micro), social networks and support groups (meso), and challenging stigma (macro).
Conclusions
HIV-positive women described interdependent and mutually constitutive relationships between marginalized social identities and inequities such as HIV-related stigma, sexism, racism, and homo/transphobia. These overlapping, multilevel forms of stigma and discrimination are representative of an intersectional model of stigma and discrimination. The present findings also suggest that micro, meso, and macro level factors simultaneously present barriers to health and well being—as well as opportunities for coping—in HIV-positive women's lives. Understanding the deleterious effects of stigma and discrimination on HIV risk, mental health, and access to care among HIV-positive women can inform health care provision, stigma reduction interventions, and public health policy.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
HIV-related stigma and discrimination—prejudice, negative attitudes, abuse, and maltreatment directed at people living with HIV—is a major factor contributing to the global HIV epidemic. HIV-related stigma, which devalues and stereotypes people living with HIV, increases vulnerability to HIV infection by reducing access to HIV prevention, testing, treatment, and support. At the personal (micro) level, HIV-related stigma can make it hard for people to take tests to determine their HIV status or to tell other people that they are HIV positive. At the social/community (meso) level, it can mean that HIV-positive people are ostracized from their communities. At the organizational/political (macro) level, it can mean that health-care workers treat HIV-positive people differently and that governments are deterred from taking fast, effective action against the HIV epidemic. In addition, HIV-related stigma is negatively associated with well-being among people living with HIV. Thus, among HIV-positive people, those who have experienced HIV-related stigma have higher levels of mental and physical illness.
Why Was This Study Done?
Racism (oppression and inequity founded on ethno-racial differences), sexism and gender discrimination (oppression and inequity based on gender bias in attitudes), and homophobia and transphobia (discrimination, fear, hostility, and violence towards nonheterosexual and transgender people, respectively) can also affect access to HIV services. However, little is known about how these different forms of stigma and discrimination interact (intersect). A better understanding of the effect of intersecting stigmas on people living with HIV could help in the development of stigma reduction interventions and HIV prevention, treatment and care programs, and could help to control global HIV infection rates. In this qualitative study (an analysis of people's attitudes and experiences rather than numerical data), the researchers investigate the intersection of HIV-related stigma, racism, sexism and gender discrimination, homophobia and transphobia among marginalized HIV-positive women in Ontario, Canada. As elsewhere in the world, HIV infection rates are increasing among women in Canada. Nearly 25% of people living with HIV in Canada are women and about a quarter of all new infections are in women. Moreover, there is a disproportionately high infection rate among marginalized women in Canada such as sex workers and lesbian, bisexual, and queer women.
What Did the Researchers Do and Find?
The researchers held 15 focus groups with 104 marginalized HIV-positive women who were recruited by word-of-mouth and through flyers circulated in community agencies serving women of diverse ethno-cultural origins. Each focus group explored topics that included challenges in daily life, medical issues and needs, and issues that were silenced within the participants' communities. The researchers analyzed the data from these focus groups using thematic analysis, an approach that identifies, analyzes, and reports themes in qualitative data. They found that women living with HIV in Ontario experienced multiple types of stigma at different levels. So, for example, women experienced HIV-related stigma at the micro (“If you're HIV-positive, you feel shameful”), meso (“The thing I hate most for people that test positive for HIV is that society ostracizes them”), and macro (“A lot of women are not getting employed because they have to disclose their status”) levels. The women also attributed their experiences of stigma and discrimination to sexism and gender discrimination, racism, homophobia and transphobia, and involvement in sex work at all three levels and described coping strategies at the micro (resilience; “I always live with hope”), meso (participation in social networks), and macro (challenging stigma) levels.
What Do These Findings Mean?
These findings indicate that marginalized HIV-positive women living in Ontario experience overlapping forms of stigma and discrimination and that these forms of stigma operate over micro, meso, and macro levels, as do the coping strategies adopted by the women. Together, these results support an intersectional model of stigma and discrimination that should help to inform discussions about the complexity of stigma and coping strategies. However, because only a small sample of nonrandomly selected women was involved in this study, these findings need to be confirmed in other groups of HIV-positive women. If confirmed, the complex system of interplay of different forms of stigma revealed here should help to inform health-care provision, stigma reduction interventions, and public-health policy, and could, ultimately, help to bring the global HIV epidemic under control.
Additional Information
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001124.
Information is available from the US National Institute of Allergy and Infectious Diseases on HIV infection and AIDS
NAM/aidsmap basic information about HIV/AIDS, and summaries of recent research findings on HIV care and treatment; its publication HIV and stigma deals with HIV-related stigma in the UK
Information is available from Avert, an international AIDS charity on many aspects of HIV/AIDS, including information on women, HIV, and AIDS, on HIV and AIDS stigma and discrimination, and on HIV/AIDS statistics for Canada (in English and Spanish)
The People Living with Stigma Index to address stigma relating to HIV and advocate on key barriers and issues perpetuating stigma; it has recently published Piecing it together for women and girls, the gender dimensions of HIV-related stigma; its website will soon include a selection of individual stories about HIV-related stigma
Patient stories about living with HIV/AIDS are available through Avert and through the charity website Healthtalkonline
doi:10.1371/journal.pmed.1001124
PMCID: PMC3222645  PMID: 22131907
5.  Understanding the Unattached Population in Ontario: Evidence from the Primary Care Access Survey (PCAS) 
Healthcare Policy  2010;6(2):33-47.
To measure primary care access on an ongoing basis, the Ontario Ministry of Health and Long-Term Care implemented the Primary Care Access Survey (PCAS) in 2006. The PCAS, a cross-sectional telephone survey, samples approximately 8,400 Ontario adults each year. It collects information on access to a family doctor, use of services, health status and socio-demographics. Analysis of the 2007—2008 PCAS (n=16,560) shows that 7.1% of Ontario's adults were without a family doctor (i.e., unattached). The attached and unattached populations differed on socio-demographic and health characteristics. Emergency department use was similar between the two groups, but walk-in clinic use was higher among the unattached. The unattached were less likely to have used care for immediate issues but accessed care in a more timely fashion than the attached. This initial exploration of the PCAS provides a better understanding of some of the differences between the attached and unattached populations in Ontario.
PMCID: PMC3016634  PMID: 22043222
6.  Palliative care for older people – exploring the views of doctors and nurses from different fields in Germany 
Background
Providing appropriate palliative care for older people is a major task for health care systems worldwide, and up to now it has also been one of the most neglected. Focusing on the German health care system, we sought to explore the attitudes of health professionals regarding their understanding of palliative care for older patients and its implementation.
Methods
In a qualitative study design, focus groups were established consisting of general practitioners, geriatricians, palliative care physicians, palliative care nurses and general nurses (a total of 29 participants). The group discussions were recorded, transcribed, coded and analysed using the methodological approach of Qualitative Description.
Results
Deficiencies in teamwork and conflicting role definitions between doctors and nurses and between family practitioners and medical specialists were found to be central problems affecting the provision of appropriate palliative care for older people. It was emphasized that there are great advantages to family doctors playing a leading role, as they usually have the longest contacts to the patients. However, the professional qualifications of family doctors were to some extent criticized. The general practitioners for their part criticized the increasing specialization on the field of palliative care. All groups complained that the German compensation system gives insufficient consideration to the time-consuming care of older patients, and about excessive bureaucracy.
Conclusion
General practitioners are the central health professionals in the delivery of palliative care for older people. They should however be encouraged to involve specialized services such as palliative care teams where necessary. With the German health care reform of 2007, a legal framework has been created that allows for this. As far as its realization is concerned, it must be ensured that the spotlight remains on the needs of the patients and not on policy conflicts and rivalries between health care professionals. Older people might particularly benefit if "talking" medicine and time-consuming care were properly catered for, financially and organizationally, in the health care system.
doi:10.1186/1472-684X-8-7
PMCID: PMC2706814  PMID: 19549336
7.  Doctors accessing mental-health services: an exploratory study 
BMJ Open  2011;1(1):e000017.
Objective
To develop a more in-depth understanding of how doctors do and do not access mental healthcare from the perspectives of doctors themselves and people they have contact with through the process.
Design
Qualitative methodology was used with semistructured interviews transcribed and analysed using Grounded Theory. Participants were 11 doctors with experience as patients of psychiatrists, four doctor and four non-doctor personal contacts (friends, family and colleagues) and eight treating psychiatrists.
Results
Participants described experiencing unrealistic expectations and a harsh work environment with poor self care and denial and minimisation of signs of mental health difficulties. Doctor contacts described particular difficulty in responding effectively to doctor friends, family and colleagues in need of mental healthcare. In contrast, non-doctor personal contacts were more able to identify and speak about concerns but not necessarily to enable accessing adequate mental-health services.
Conclusions
Three areas with potential to address in supporting doctors' accessing of appropriate healthcare have been identified: (1) processes to enable doctors to maintain high standards of functioning with less use of minimisation and denial; (2) improving the quality and effectiveness of informal doctor-to-doctor conversations about mental-health issues among themselves; (3) role of non-doctor support people in identifying doctors' mental-health needs and enabling their access to mental healthcare. Further research in all these areas has the potential to contribute to improving doctors' access to appropriate mental healthcare and may be of value for the general population.
Article summary
Article focus
Doctors' accessment of adequate mental healthcare is less than optimal.
Family and community contacts have an important role in accessing mental healthcare.
Our understanding of the processes related to doctors accessing mental healthcare can be improved by exploring perspectives of doctor patients, their support people and treating psychiatrists.
Key messages
Doctors' unrealistic expectations of themselves and associated minimisation and denial of a range of self care needs may function as a barrier to accessing mental healthcare.
Addressing how doctors respond to other doctors in informal conversations indicating mental healthcare needs may be helpful in improving access to care.
Non-doctor support people may have a valuable role in enabling doctors to access appropriate mental healthcare.
All these areas need further research.
Strengths and limitations of this study
This is the first study of its kind and generates new insights in an important area.
Because of challenges in recruiting doctors with experience as patients of psychiatrists, a hard-to-reach group, the sample is small and not broadly representative.
doi:10.1136/bmjopen-2010-000017
PMCID: PMC3191385  PMID: 22021726
Child & adolescent psychiatry; adult psychiatry; physicians' health; accessing healthcare; impaired physician; mental health
8.  Navigating the mental health and addictions maze: a community-based pilot project of a new role in primary mental health care 
Problem being addressed In a medically under-served rural Canadian community where overburdened family physicians provide most of the cae for patients with mental illness and substance use problems, providing access to timely and effective help for all citizens is a challenge. The care burden of unmet mental health needs is experienced throughout the larger community by diverse community service providers.
Supporting a shared understanding of the needs and challenges, and ensuring effective connection and clear communication between diverse disciplines in primary care, community services and the formal mental health system requires models of service organisation and delivery that go beyond traditional clinical roles.
In cancer care a navigator model has previously been used to address information and service gaps and improve patient experience. We wished to evaluate whether a community-supported navigator model could help solve some of the challenges for clients and service providers in our community, while at the same time allowing data collection that offers a clearer understanding of actual service needs.
Pre-programme activities Community members formed an interdisciplinary community steering committee which met monthly for two years to develop and adapt a service and collaborative research model, generate support, secure ethical approval and raise funds.
Programme description The navigator service was embedded in a local family service organisation, the steering committee met monthly, and along with the researchers met regularly with programme staff and provided support, oversight and development of ethical data collection.
Navigators provided low barrier access, comprehensive assessment, collaborative service planning, and linkage and referral facilitation for any individual or family who requested assistance with a mental health or substance use concern. Navigators also serve as an information resource for any community service provider or family physician needing to assist a client, and collected data on local service needs.
Conclusions Analysis of quantitative administrative data, consented research data, and qualitative interview and survey data demonstrated that this community supported navigator service model was effective in improving service access, assessment and linkage for citizens with mental health and addictions concerns, and connecting a range of community services into a more effective network of care. Connecting unattached clients with a primary care provider and supporting needs assessment and service planning for patients of local family physicians were key navigator functions.
PMCID: PMC2777588  PMID: 22477883
community based participator research; mental health navigation; navigator model; primary mental health care
9.  Holding relationships in primary care: a qualitative exploration of doctors' and patients' perceptions 
The British Journal of General Practice  2011;61(589):e484-e491.
Background
Ongoing doctor-patient relationships are integral to the patient-centred ideals of UK general practice, particularly for patients with chronic conditions or complex health problems. ‘Holding’, a doctor-patient relationship defined as establishing and maintaining a trusting, constant, reliable relationship that is concerned with ongoing support without expectation of cure, has previously been suggested as a management strategy for such patients.
Aim
To explore urban GPs' and patients' experiences of the management of chronic illness, with a particular focus on holding relationships.
Design and setting
A qualitative study in urban and suburban areas of north west England.
Method
Participating GPs recruited registered patients with chronic illness with whom they felt they had established a holding relationship. Data were collected by semi-structured interviews and subjected to constant comparative qualitative analysis.
Results
GP responders considered holding to be a small but routine part of theirwork. Benefits described included providing support to patients but also containing demands on secondary care. Patient responders, all with complex ongoing needs, described the relationship with their GP as a reassuring, positive, and securing partnership. Both GP and patient responders emphasised the importance of pre-existing knowledge of past life-story, and valued holding as a potential tool for changing health-related behaviour. Difficulties with holding work included fears of dependency, and problems of access.
Conclusion
Holding relationships are a routine part of general practice, valued by both GPs and patients. Naming and valuing holding work may legitimise this activity in the management of people with chronic and complex health problems.
doi:10.3399/bjgp11X588457
PMCID: PMC3145532  PMID: 21801542
chronic illness; doctor-patient relations; continuity of care; qualitative research
10.  A qualitative study of the views of patients with long-term conditions on family doctors in Hong Kong 
BMC Family Practice  2010;11:46.
Background
Primary care based management of long-term conditions (LTCs) is high on the international healthcare agenda, including the Asia-Pacific region. Hong Kong has a 'mixed economy' healthcare system with both public and private sectors with a range of types of primary care doctors. Recent Hong Kong Government policy aims to enhance the management of LTCs in primary care possibly based on a 'family doctor' model. Patients' views on this are not well documented and the aim of the present study was to explore the views of patients with LTCs on family doctors in Hong Kong.
Methods
The views of patients (with a variety of LTCs) on family doctors in Hong Kong were explored. Two groups of participants were interviewed; a) those who considered themselves as having a family doctor, b) those who considered themselves as not having a family doctor (either with a regular primary care doctor but not a family doctor or with no regular primary care doctor). In-depth individual semi-structured interviews were carried out with 28 participants (10 with a family doctor, 10 with a regular doctor, and 8 with no regular doctor) and analysed using the constant comparative method.
Results
Participants who did not have a family doctor were familiar with the concept but regarded it as a 'luxury item' for the rich within the private healthcare system. Those with a regular family doctor (all private) regarded having one as important to their and their family's health. Participants in both groups felt that as well as the more usual family medicine specialist or general practitioner, traditional Chinese medicine practitioners also had the potential to be family doctors. However most participants attended the public healthcare system for management of their LTCs whether they had a family doctor or not. Cost, perceived need, quality, trust, and choice were all barriers to the use of family doctors for the management of their LTCs.
Conclusions
Important barriers to the adoption of a 'family doctor' model of management of LTCs exist in Hong Kong. Effective policy implementation seems unlikely unless these complex barriers are addressed.
doi:10.1186/1471-2296-11-46
PMCID: PMC2889885  PMID: 20525340
11.  "I really should've gone to the doctor": older adults and family caregivers describe their experiences with community-acquired pneumonia 
BMC Family Practice  2006;7:30.
Background
Responding to acute illness symptoms can often be challenging for older adults. The primary objective of this study was to describe how community-dwelling older adults and their family members responded to symptoms of community-acquired pneumonia (CAP).
Methods
A qualitative study that used face-to-face semi-structured interviews to collect data from a purposeful sample of seniors aged 60+ and their family members living in a mid-sized Canadian city. Data analysis began with descriptive and interpretive coding, then advanced as the research team repeatedly compared emerging thematic categories to the raw data. Searches for disconfirming evidence and member checking through focus groups provided additional data and helped ensure rigour.
Results
Community-acquired pneumonia symptoms varied greatly among older adults, making decisions to seek care difficult for them and their family members. Both groups took varying amounts of time as they attempted to sort out what was wrong and then determine how best to respond. Even after they concluded something was wrong, older adults with confirmed pneumonia continued to wait for days, to over a week, before seeking medical care. Participants provided diverse reasons for this delay, including fear, social obligations (work, family, leisure), and accessibility barriers (time, place, systemic). Several older adults and family members regretted their delays in seeking help.
Conclusion
Treatment-seeking delay is a variable, multi-phased decision-making process that incorporates symptom assessment plus psychosocial and situational factors. Public health and health care professionals need to educate older adults about the potential causes and consequences of unnecessary waits. Such efforts may reduce the severity of community-acquired pneumonia upon presentation at clinics and hospitals, and that, in turn, could potentially improve health outcomes.
doi:10.1186/1471-2296-7-30
PMCID: PMC1468411  PMID: 16677391
12.  Village doctor-assisted case management of rural patients with schizophrenia: protocol for a cluster randomized control trial 
Background
Strict compliance with prescribed medication is the key to reducing relapses in schizophrenia. As villagers in China lack regular access to psychiatrists to supervise compliance, we propose to train village ‘doctors’ (i.e., villagers with basic medical training and currently operating in villages across China delivering basic clinical and preventive care) to manage rural patients with schizophrenia with respect to compliance and monitoring symptoms. We hypothesize that with the necessary training and proper oversight, village doctors can significantly improve drug compliance of villagers with schizophrenia.
Methods/design
We will conduct a cluster randomized controlled trial in 40 villages in Liuyang, Hunan Province, China, home to approximately 400 patients with schizophrenia. Half of the villages will be randomized into the treatment group (village doctor, or VD model) wherein village doctors who have received training in a schizophrenia case management protocol will manage case records, supervise drug taking, educate patients and families on schizophrenia and its treatment, and monitor patients for signs of relapse in order to arrange prompt referral. The other 20 villages will be assigned to the control group (case as usual, or CAU model) wherein patients will be visited by psychiatrists every two months and receive free antipsychotic medications under an on-going government program, Project 686. These control patients will receive no other management or follow up from health workers. A baseline survey will be conducted before the intervention to gather data on patient’s socio-economic status, drug compliance history, and clinical and health outcome measures. Data will be re-collected 6 and 12 months into the intervention. A difference-in-difference regression model will be used to detect the program effect on drug compliance and other outcome measures. A cost-effectiveness analysis will also be conducted to compare the value of the VD model to that of the CAU group.
Discussion/implications
Lack of specialists is a common problem in resource-scarce areas in China and other developing countries. The results of this experiment will provide high level evidence on the role of health workers with relatively limited medical training in managing severe psychiatric disease and other chronic conditions in developing countries.
Trial registration
ChiCTR-TRC-13003263.
doi:10.1186/1748-5908-9-13
PMCID: PMC3929227  PMID: 24433461
Schizophrenia case management; Village doctor; Community health worker; Cluster randomized controlled trial; Project 686; Rural community health; Drug compliance; Mental health intervention
13.  Is Canadian women’s breast cancer screening behaviour associated with having a family doctor? 
Canadian Family Physician  2010;56(4):e150-e157.
ABSTRACT
OBJECTIVE
To assess whether regular care from a family physician is associated with regular participation in screening mammography.
DESIGN
Secondary analysis of the 2006 Canadian Community Health Survey data.
SETTING
Canada.
PARTICIPANTS
Cross-sectional sample of 15 195 Canadian women aged 50 to 69 years.
MAIN OUTCOME MEASURES
The outcome of interest was screening mammography within the past 2 years; the key explanatory factor was active interaction with a family physician. Control factors included sociodemographic characteristics, other cancer screening behaviour, and other cancer risk habits.
RESULTS
Active interaction with a regular family doctor doubled the odds that a woman had received a recent screening mammogram. Other cancer screening and preventive measures were also strongly associated with that outcome. A woman who had had a recent Papanicolaou test was more than 3 times as likely to have had a recent mammogram; nonsmokers were much more likely to have had a recent mammogram than smokers.
CONCLUSION
Adults who receive regular care from family physicians are more likely to participate in screening mammography within the recommended time frames.
PMCID: PMC2860842  PMID: 20393077
14.  Cost-Effectiveness of Interventions for Chronic Obstructive Pulmonary Disease (COPD) Using an Ontario Policy Model 
Executive Summary
In July 2010, the Medical Advisory Secretariat (MAS) began work on a Chronic Obstructive Pulmonary Disease (COPD) evidentiary framework, an evidence-based review of the literature surrounding treatment strategies for patients with COPD. This project emerged from a request by the Health System Strategy Division of the Ministry of Health and Long-Term Care that MAS provide them with an evidentiary platform on the effectiveness and cost-effectiveness of COPD interventions.
After an initial review of health technology assessments and systematic reviews of COPD literature, and consultation with experts, MAS identified the following topics for analysis: vaccinations (influenza and pneumococcal), smoking cessation, multidisciplinary care, pulmonary rehabilitation, long-term oxygen therapy, noninvasive positive pressure ventilation for acute and chronic respiratory failure, hospital-at-home for acute exacerbations of COPD, and telehealth (including telemonitoring and telephone support). Evidence-based analyses were prepared for each of these topics. For each technology, an economic analysis was also completed where appropriate. In addition, a review of the qualitative literature on patient, caregiver, and provider perspectives on living and dying with COPD was conducted, as were reviews of the qualitative literature on each of the technologies included in these analyses.
The Chronic Obstructive Pulmonary Disease Mega-Analysis series is made up of the following reports, which can be publicly accessed at the MAS website at: http://www.hqontario.ca/en/mas/mas_ohtas_mn.html.
Chronic Obstructive Pulmonary Disease (COPD) Evidentiary Framework
Influenza and Pneumococcal Vaccinations for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Smoking Cessation for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Community-Based Multidisciplinary Care for Patients With Stable Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Pulmonary Rehabilitation for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Long-Term Oxygen Therapy for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Noninvasive Positive Pressure Ventilation for Acute Respiratory Failure Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Noninvasive Positive Pressure Ventilation for Chronic Respiratory Failure Patients With Stable Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Hospital-at-Home Programs for Patients With Acute Exacerbations of Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Home Telehealth for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Cost-Effectiveness of Interventions for Chronic Obstructive Pulmonary Disease Using an Ontario Policy Model
Experiences of Living and Dying With COPD: A Systematic Review and Synthesis of the Qualitative Empirical Literature
For more information on the qualitative review, please contact Mita Giacomini at: http://fhs.mcmaster.ca/ceb/faculty_member_giacomini.htm.
For more information on the economic analysis, please visit the PATH website: http://www.path-hta.ca/About-Us/Contact-Us.aspx.
The Toronto Health Economics and Technology Assessment (THETA) collaborative has produced an associated report on patient preference for mechanical ventilation. For more information, please visit the THETA website: http://theta.utoronto.ca/static/contact.
Background
Chronic obstructive pulmonary disease (COPD) is characterized by chronic inflammation throughout the airways, parenchyma, and pulmonary vasculature. The inflammation causes repeated cycles of injury and repair in the airway wall— inflammatory cells release a variety of chemicals and lead to cellular damage. The inflammation process also contributes to the loss of elastic recoil pressure in the lung, thereby reducing the driving pressure for expiratory flow through narrowed and poorly supported airways, in which airflow resistance is significantly increased. Expiratory flow limitation is the pathophysiological hallmark of COPD.
Exacerbations of COPD contribute considerably to morbidity and mortality, and impose a burden on the health care system. They are a leading cause of emergency room visits and hospitalizations, particularly in the winter. In Canada, the reported average cost for treating a moderate exacerbation is $641; for a major exacerbation, the cost is $10,086.
Objective
The objective of this study was to evaluate the cost-effectiveness and budget impact of the following interventions in moderate to very severe COPD, investigated in the Medical Advisory Secretariat Chronic Obstructive Pulmonary Disease Mega-Analysis Series:
smoking cessation programs in moderate COPD in an outpatient setting:
– intensive counselling (IC) versus usual care (UC)
– nicotine replacement therapy (NRT) versus UC
– IC + NRT versus placebo
– bupropion versus placebo
multidisciplinary care (MDC) teams versus UC in moderate to severe COPD in an outpatient setting
pulmonary rehabilitation (PR) versus UC following acute exacerbations in moderate to severe COPD
long-term oxygen therapy (LTOT) versus UC in severe hypoxemia in COPD in an outpatient setting
ventilation:
– noninvasive positive pressure ventilation (NPPV) + usual medical care versus usual medical care in acute respiratory failure due to an acute exacerbation in severe COPD in an inpatient setting
– weaning with NPPV versus weaning with invasive mechanical ventilation in acute respiratory failure due to an acute exacerbation in very severe COPD in an inpatient setting
Methods
A cost-utility analysis was conducted using a Markov probabilistic model. The model consists of different health states based on the Global Initiative for Chronic Obstructive Lung Disease COPD severity classification. Patients were assigned different costs and utilities depending on their severity health state during each model cycle. In addition to moving between health states, patients were at risk of acute exacerbations of COPD in each model cycle. During each cycle, patients could have no acute exacerbation, a minor acute exacerbation, or a major exacerbation. For the purposes of the model, a major exacerbation was defined as one that required hospitalization. Patients were assigned different costs and utilities in each model cycle, depending on whether they experienced an exacerbation, and its severity.
Starting cohorts reflected the various patient populations from the trials analyzed. Incremental cost-effectiveness ratios (ICERs)—that is, costs per quality-adjusted life-year (QALY)—were estimated for each intervention using clinical parameters and summary estimates of relative risks of (re)hospitalization, as well as mortality and abstinence rates, from the COPD mega-analysis evidence-based analyses.
A budget impact analysis was also conducted to project incremental costs already being incurred or resources already in use in Ontario. Using provincial data, medical literature, and expert opinion, health system impacts were calculated for the strategies investigated.
All costs are reported in Canadian dollars.
Results
All smoking cessation programs were dominant (i.e., less expensive and more effective overall). Assuming a base case cost of $1,041 and $1,527 per patient for MDC and PR, the ICER was calculated to be $14,123 per QALY and $17,938 per QALY, respectively. When the costs of MDC and PR were varied in a 1-way sensitivity analysis to reflect variation in resource utilization reported in the literature, the ICER increased to $55,322 per QALY and $56,270 per QALY, respectively. Assuming a base case cost of $2,261 per year per patient for LTOT as reported by data from the Ontario provincial program, the ICER was calculated to be $38,993 per QALY. Ventilation strategies were dominant (i.e., cheaper and more effective), as reflected by the clinical evidence of significant in-hospital days avoided in the study group.
Ontario currently pays for IC through physician billing (translating to a current burden of $8 million) and bupropion through the Ontario Drug Benefit program (translating to a current burden of almost $2 million). The burden of NRT was projected to be $10 million, with future expenditures of up to $1 million in Years 1 to 3 for incident cases.
Ontario currently pays for some chronic disease management programs. Based on the most recent Family Health Team data, the costs of MDC programs to manage COPD were estimated at $85 million in fiscal year 2010, with projected future expenditures of up to $51 million for incident cases, assuming the base case cost of the program. However, this estimate does not accurately reflect the current costs to the province because of lack of report by Family Health Teams, lack of capture of programs outside this model of care by any data set in the province, and because the resource utilization and frequency of visits/follow-up phone calls were based on the findings in the literature rather than the actual Family Health Team COPD management programs in place in Ontario. Therefore, MDC resources being utilized in the province are unknown and difficult to measure.
Data on COPD-related hospitalizations were pulled from Ontario administrative data sets and based on consultation with experts. Half of hospitalized patients will access PR resources at least once, and half of these will repeat the therapy, translating to a potential burden of $17 million to $32 million, depending on the cost of the program. These resources are currently being absorbed, but since utilization is not being captured by any data set in the province, it is difficult to quantify and estimate. Provincial programs may be under-resourced, and patients may not be accessing these services effectively.
Data from the LTOT provincial program (based on fiscal year 2006 information) suggested that the burden was $65 million, with potential expenditures of up to $0.2 million in Years 1 to 3 for incident cases.
From the clinical evidence on ventilation (i.e., reduction in length of stay in hospital), there were potential cost savings to the hospitals of $42 million and $12 million for NPPV and weaning with NPPV, respectively, if the study intervention were adopted. Future cost savings were projected to be up to $4 million and $1 million, respectively, for incident cases.
Conclusions
Currently, costs for most of these interventions are being absorbed by provider services, the Ontario Drug Benefit Program, the Assistive Devices Program, and the hospital global budget. The most cost-effective intervention for COPD will depend on decision-makers’ willingness to pay. Lack of provincial data sets capturing resource utilization for the various interventions poses a challenge for estimating current burden and future expenditures.
PMCID: PMC3384363  PMID: 23074422
15.  In Idiopathic Calcium Oxalate Stone Formers, Unattached Stones Show Evidence of Having Originated as Attached Stones on Randall’s Plaque 
BJU international  2009;105(2):242-245.
Objective
To analyze the structure and composition of unattached stones in idiopathic calcium oxalate stone formers (ICSF) and compare them to attached stones from the same cohort in order to investigate whether more than one pathogenic mechanism exists for stone formation in ICSF.
Patients and methods
ICSF undergoing percutaneous nephrolithotomy or ureteroscopy for treatment of nephrolithiasis were consented for this study. All accessible renal papillae were endoscopically imaged using a digital endoscope. All stones were removed and determined by the operating surgeon to be attached or unattached to the underlying papilla. Micro-computed tomography (micro-CT), which provides three-dimensional analysis of entire stones, was used to compare the structure and composition of attached versus unattached stones.
Results
Of 115 stones collected from 9 patients (12 renal units), only 25 stones were found not to be attached to renal papillae. Of these 25 stones, 4 were lost and 12 showed definite morphological evidence of having been attached to tissue, probably having been knocked off of papillae during access. For the remaining 9 stones, micro-CT analysis revealed at least one internal region of calcium phosphate within each of these unattached calcium oxalate (CaOx) stones. That is, the internal structure of the unattached stones is consistent with their having originated attached to RP, and then having become detached but retained in the kidney, with new layers of CaOx eventually covering the original attachment site.
Conclusions
Micro CT analysis supports the hypothesis that in ICSF, both attached and unattached stones occur as a result of a common pathogenic mechanism. That is, in this type of stone former, CaOx stones—even those not showing morphology that betrays attachment—all originate attached to interstitial plaque on the renal papilla.
doi:10.1111/j.1464-410X.2009.08637.x
PMCID: PMC2807918  PMID: 19549258
Randall’s plaque; nephrolithiasis; stone pathogenesis; micro computed tomography
16.  Reasons for Consulting a Doctor on the Internet: Web Survey of Users of an Ask the Doctor Service 
Background
In 1998 the Swedish noncommercial public health service Infomedica opened an Ask the Doctor service on its Internet portal. At no charge, anyone with Internet access can use this service to ask questions about personal health-related and disease-related matters.
Objective
To study why individuals choose to consult previously-unknown doctors on the Internet.
Methods
Between November 1, 2001, and January 31, 2002 a Web survey of the 3622 Ask the Doctor service users, 1036 men (29%) and 2586 (71%) women, was conducted. We excluded 186 queries from users. The results are based on quantitative and qualitative analysis of the answers to the question "Why did you choose to ask a question at Infomedica's 'Ask the Doctor' service?"
Results
1223 surveys were completed (response rate 34%). Of the participants in the survey 322 (26%) were male and 901 (74%) female. As major reasons for choosing to consult previously-unknown doctors on the Internet participants indicated: convenience (52%), anonymity (36%), "doctors too busy" (21%), difficult to find time to visit a doctor (16%), difficulty to get an appointment (13%), feeling uncomfortable when seeing a doctor (9%), and not being able to afford a doctors' visit (3%). Further motives elicited through a qualitative analysis of free-text answers were: seeking a second opinion, discontent with previous doctors and a wish for a primary evaluation of a medical problem, asking embarrassing or sensitive questions, seeking information on behalf of relatives, preferring written communication, and (from responses by expatriates, travelers, and others) living far away from regular health care.
Conclusions
We found that an Internet based Ask the Doctor service is primarily consulted because it is convenient, but it may also be of value for individuals with needs that regular health care services have not been able to meet.
doi:10.2196/jmir.5.4.e26
PMCID: PMC1550573  PMID: 14713654
Internet; remote consultation; physician-patient relations; access to information; information services; anonyms and pseudonyms
17.  Why do women consult doctors? Social factors and the use of the general practitioner. 
This study was designed to investigate personal and social factors associated with demand for care by women aged between 20 and 44 years, a group unlikely to suffer from chronic illness. A random sample of women was drawn from the age-sex register of a south London group practice, and information was obtained concerning their daily symptom perception, anxiety level, social and health characteristics, and their consultations for one year. Social class, family involvement, number of children in household, satisfaction with the housing, and use of other health and social services were not associated with demand for general practitioner care. Absence of basic housing amenities, difficulties in running the household, brevity of stay in the house or neighbourhood, and lack of attachment of the neighbourhood were related to a high patient-initiated consultation rate. Some of the possible interpretations of these results are discussed together with their implications for social policy planning.
PMCID: PMC479031  PMID: 597674
18.  Don’t Forget the Doctor: Gastroenterologists’ Preferences on the Development of mHealth Tools for Inflammatory Bowel Disease 
JMIR mHealth and uHealth  2015;3(1):e5.
Background
Inflammatory bowel disease (IBD) encompasses a number of disorders of the gastrointestinal tract. Treatment for IBD is lifelong and complex, and the majority of IBD patients seek information on the Internet. However, research has found existing digital resources to be of questionable quality and that patients find content lacking. Gastroenterologists are frontline sources of information for North American IBD patients, but their opinions and preferences for digital content, design, and utility have not been investigated. The purpose of this study is to systematically explore gastroenterologists’ perceptions of, and design preferences for, mHealth tools.
Objective
Our goal was to critically assess these issues and elicit expert feedback by seeking consensus with Canadian gastroenterologists.
Methods
Using a qualitative approach, a closed meeting with 7 gastroenterologists was audio recorded and field notes taken. To synthesize results, an anonymous questionnaire was collected at the end of the session. Participant-led discussion themes included methodological approaches to non-adherence, concordance, patient-centricity, and attributes of digital tools that would be actively supported and promoted.
Results
Survey results indicated that 4 of the 7 gastroenterologists had experienced patients bringing digital resources to a visit, but 5 found digital patient resources to be inaccurate or irrelevant. All participants agreed that digital tools were of increasing importance and could be leveraged to aid in consultations and save time. When asked to assess digital attributes that they would be confident to refer patients to, all seven indicated that the inclusion of evidence-based facts were of greatest importance. Patient peer-support networks were deemed an asset but only if closely monitored by experts. When asked about interventions, nearly all (6/7) preferred tools that addressed a mix of compliance and concordance, and only one supported the development of tools that focused on compliance. Participants confirmed that they would actively refer patients and other physicians to digital resources. However, while a number of digital IBD tools exist, gastroenterologists would be reluctant to endorse them.
Conclusions
Gastroenterologists appear eager to use digital resources that they believe benefit the physician-patient relationship, but despite the trend of patient-centric tools that focus on concordance (shared decision making and enlightened communication between patients and their health care providers), they would prefer digital tools that highlight compliance (patient following orders). This concordance gap highlights an issue of disparity in digital health: patients may not use tools that physicians promote, and physicians may not endorse tools that patients will use. Further research investigating the concordance gap, and tensions between physician preferences and patient needs, is required.
doi:10.2196/mhealth.3987
PMCID: PMC4319145  PMID: 25608628
mHealth; adherence; concordance; compliance; shared decision making; therapeutic alliance; gastroenterology; IBD; ulcerative colitis
19.  What happens when patients know more than their doctors? Experiences of health interactions after diabetes patient education: a qualitative patient-led study 
BMJ Open  2013;3(11):e003583.
Objective
To explore the impact of patient education on the lives of people with diabetes, including the effect on interactions with doctors and other healthcare professionals.
Design
Qualitative user-led study using longitudinal interviews and 146 h of participant observation. Data were analysed using a narrative approach.
Participants
21 patients with type 1 diabetes, those either about to attend a patient education course or those who had completed the course in the previous 10 years.
Setting
Established patient education centres in three UK teaching hospitals teaching the Dose Adjustment for Normal Eating (DAFNE) course.
Results
Both postcourse and several years later, most participants spoke of the experience of taking part in education as life-changingly positive. It helped them understand how to gain control over a very complex disease and freed them from dependence on medical advice and restrictive regimes. However, interactions within the health system following patient education could be fraught. Participants emerged from the course with greater condition-specific knowledge than many of the healthcare professionals they encountered. When these professionals did not understand what their patients were trying to do and were uncomfortable trusting their expertise, there could be serious consequences for these patients' ability to continue effective self-management.
Conclusions
Patients who have in-depth knowledge of their condition encounter problems when their expertise is seen as inappropriate in standard healthcare interactions, and expertise taught to patients in one branch of medicine can be considered non-compliant by those who are not specialists in that field. Although patient education can give people confidence in their own self-management skills, it cannot solve the power imbalance that remains when a generalist healthcare professional, however well meaning, blocks access to medication and supplies needed to manage chronic diseases successfully. There is a role for those involved in primary and hospital care, including those supporting and training healthcare professionals, to recognise these problems and find ways to acknowledge and respect chronic patients' biomedical and practical expertise.
doi:10.1136/bmjopen-2013-003583
PMCID: PMC3831109  PMID: 24231459
Medical Education & Training; Primary Care
20.  A Guide for Health Professionals Working with Aboriginal Peoples: Executive Summary 
Objective
to provide Canadian health professionals with a network of information and recommendations regarding Aboriginal health.
Options
health professionals working with Aboriginal individuals and communities in the area of women’s health care.
Outcomes
improved health status of Aboriginal peoples in Canada.
Appropriateness and accessibility of women’s health services for Aboriginal peoples.
Improved communication and clinical skills of health professionals in the area of Aboriginal health.
Improved quality of relationship between health professionals and Aboriginal individuals and communities.
Improved quality of relationship between health care professionals and Aboriginal individuals and communities.
Evidence
recommendations are based on expert opinion and a review of the literature. Published references were identified by a Medline search of all review articles, randomized clinical control trials, meta-analyses, and practice guidelines from 1966 to February 1999, using the MeSH headings “Indians, North American or Eskimos” and “Health.”* Subsequently published articles were brought to the attention of the authors in the process of writing and reviewing the document. Ancillary and unpublished references were recommended by members of the SOGC Aboriginal Health Issues Committee and the panel of expert reviewers.
Values
information collected was reviewed by the principal author. The social, cultural, political, and historic context of Aboriginal peoples in Canada, systemic barriers regarding the publication of information by Aboriginal authors, the diversity of Aboriginal peoples in Canada, and the need for a culturally appropriate and balanced presentation were carefully considered in addition to more traditional scientific evaluation. The majority of information collected consisted of descriptive health and social information and such evaluation tools as the evidence guidelines of the Canadian Task Force on the Periodic Health exam were not appropriate.
Benefits, costs, and harms
utilization of the information and recommendations by Canadian health professionals will enhance understanding, communication, and clinical skills in the area of Aboriginal health. The resulting enhancement of collaborative relationships between Aboriginal peoples and their women’s health providers may contribute to health services that are more appropriate, effective, efficient, and accessible for Aboriginal peoples in Canada. The educational process may require an initial investment of time from the health professional.
Recommendations
Recommendations were grouped according to four themes: sociocultural context, health concerns, cross-cultural understanding, and Aboriginal health resources. Health professionals are encouraged to learn the appropriate names, demographics, and traditional geographic territories and language groups of the various Aboriginal groups in Canada. In addition, sensitivity to the impact of colonization and current socioeconomic challenges to the health status of Aboriginal peoples is warranted. Health services for Aboriginal peoples should take place as close to home as possible. Governmental obligations and policies regarding determination are recognized. With respect to health concerns, holistic definitions of health, based on Aboriginal perspectives, are put forward. Aboriginal peoples continue to experience a disproportionate burden of health problems. Health professionals are encouraged to become familiar with several key areas of morbidity and mortality. Relationships between Aboriginal peoples and their care providers need to be based on a foundation of mutual respect. Gaps and barriers in the current health care system for Aboriginal peoples are identified. Health professionals are encouraged to work with Aboriginal individuals and communities to address these gaps and barriers. Aboriginal peoples require culturally appropriate health care, including treatment in their own languages when possible. This may require interpreters or Aboriginal health advocates. Health professionals are encouraged to recognize the importance of family and community roles, and to respect traditional medicines and healers. Health professionals can develop their sensitivities towards Aboriginal peoples by participating in workshops, making use of educational resources, and by spending time with Aboriginal peoples in their communities. Aboriginal communities and health professionals are encouraged to support community-based, community-directed health services and health research for Aboriginal peoples. In addition, the education of more Aboriginal health professionals is essential. The need for a preventative approach to health programming in Aboriginal communities is stressed.
Validation
recommendations were reviewed and revised by the SOGC Aboriginal Health Issues Committee, a panel of expert reviewers, and the SOGC Council. In addition, this document was also reviewed and supported by the Assembly of First Nations, Canadian Institute of Child Health, Canadian Paediatric Society, College of Family Physicians of Canada, Congress of Aboriginal Peoples, Federation of Medical Women of Canada, Inuit Tapirisat of Canada, Metis National Council, National Indian and Inuit Community Health Representatives Organization, and Pauktuutit Inuit Women’s Association.
Sponsor
Society of Obstetricians and Gynaecologists of Canada.
PMCID: PMC3653835  PMID: 23682204 CAMSID: cams2752
21.  Improving communication between doctor and patient: eHealth in the Netherlands, an established cloud solution 
In the Netherlands, like in many West European countries, demand for healthcare is already sharply increasing, with further acceleration expected soon. All parties involved are convinced that the resulting demand for funding of healthcare will not be met by economic growth. The resulting paradigma shift (live longer healthy, self-care and patient centred care) is a challenge not only for scientists, but for politicians and healthcare-providers as well.
One of the solutions in the paradigma shift is eHealth. eHealth can refer to automated data-exchange between a device and a central database, but also to healthcare practices that use webbased communication. Strengthening patient participation, motivation and self-management is the hope for better therapy outcome. Early deviations need to be recognized, adverse reactions to be understood and appropriate action to be taken. In itself not new, diaries have been around for decades, but appropriate assessment of its content is too time-consuming. Therefore, the challenge is to involve both the patient and the attending professional (-s) and give eHealth solutions a place in the context of regular care. We combined the internet cloud with advanced security-technology to provide an answer to that: Curavista health, a database driven internetplatform for patient@home and doctor@work.
Patient@home replies to webquestionnaires and fill online diaries. The responses are summarized in tables, graphs or automated follow-ups and the patient has immediate insight in the progression achieved. Not only does database technology allow for immediate processing of the responses into summaries; it is also possible to highlight differences, produce alerts or (refer to) educational information.
Doctor@work, using an own account, has access to the responses as well as to the summaries, resulting in early insight. Because the patient@home does not necessarily record only biometrics, but also has the opportunity to add other types of replies, which gives a broader context to the actual situation the patient is in.
Regular care is not only faced with an ageing population but, as a result of new interventions, also with an increased incidence of people with multiple diseases. Curavista health has therefore been designed with the process of chronic care as its cornerstone: the basic architecture for each indication is identical, the content is different. Multiple indications can be attained to one account (doctor or patient) and multiple relations (doctor to patients, patient to professionals) maintained.
Started in 2002, today more than 20 indications are covered using this platform. It is used in both primary care (GPs) as well in out-clinic hospital care: 1000+doctors monitor(-ed) 50,000+patients. The first reports are that face-to-face consultations not only run more effective and more efficient when using the summaries, but also more satisfactorily: the available time can be devoted to the patient need, rather than to the inventory of the patient needs. Is it only a matter of time until timing of face-to-face consultations can be based upon cloud-based eHealth solutions?
PMCID: PMC3571145
eHealth; cloud solution
22.  “We have become doctors for ourselves”: motives for malaria self-care among adults in southeastern Tanzania 
Malaria Journal  2014;13:249.
Background
Prompt and appropriate treatment of malaria with effective medicines remains necessary if malaria control goals are to be achieved. The theoretical concepts from self-care and the health belief model were used to examine the motivations for malaria self-care among the adult population.
Methods
A qualitative study was conducted through eight focus group discussions with adult community members to explore their general opinions, views and perceptions of malaria and of its treatments. These groups were followed by 15 in-depth interviews of participants with a recent malaria experience to allow for an in-depth exploration of their self-care practices. The analysis followed principles of grounded theory and was conducted using Nvivo 9 qualitative data management software.
Results
The self-treatment of malaria at home was found to be a common practice among the study participants. The majority of the participants practiced self-medication with a painkiller as an initial response. The persistence and the worsening of the disease symptoms prompted participants to consider other self-care options. Perceptions that many malaria symptoms are suggestive of other conditions motivated participants to self-refer for malaria test. The accessibility of private laboratory facilities and drug shops motivated their use for malaria tests and for obtaining anti-malarial medicines, respectively. Self-treatment with anti-malarial monotherapy was common, motivated by their perceived effectiveness and availability. The perceived barriers to using the recommended combination treatment, artemether-lumefantrine, were related to the possible side-effects and to uncertainty about their effectiveness, and these doubts motivated some participants to consider self-medication with local herbs. Several factors were mentioned as motivating people for self-care practices. These included poor patient provider relationship, unavailability of medicine and the costs associated with accessing treatments from the health facilities.
Conclusions
Malaria self-care and self-treatment with anti-malarial monotherapy are common among adults, and are motivated by both individual characteristics and the limitations of the existing health care facilities. There is a need for public health interventions to take into account community perceptions and cultural schemas on malaria self-care practices.
doi:10.1186/1475-2875-13-249
PMCID: PMC4085372  PMID: 24986165
Malaria; Self-care; Adults; Qualitative methods; Self-medication; Tanzania
23.  What E-patients Want From the Doctor-Patient Relationship: Content Analysis of Posts on Discussion Boards 
Background
People with long-term conditions are encouraged to take control and ownership of managing their condition. Interactions between health care staff and patients become partnerships with sharing of expertise. This has changed the doctor-patient relationship and the division of roles and responsibilities that traditionally existed, but what each party expects from the other may not always be clear. Information that people with long-term conditions share on Internet discussion boards can provide useful insights into their expectations of health care staff. This paper reports on a small study about the expectations that people with a long-term condition (diabetes) have of their doctors using information gleaned from Internet discussion boards.
Objective
The aim of this study was to ascertain what people with diabetes who use Internet discussion forums want from their doctors. The study objectives were to identify what people with diabetes (1) consider their role in condition management, (2) consider their doctor’s role in managing their condition, (3) see as positive elements of their interactions with medical staff, and (4) find problematic in their interactions with medical staff.
Methods
The study used qualitative methodology to explore the experiences, views, and perceptions of individuals participating on 4 Internet message boards. Posts made on the discussion boards were analyzed using the principles of qualitative content analysis. The meanings of sections of data were noted using codes that were developed inductively; those with similar codes were merged into subcategories and related subcategories were combined to form categories.
Results
The key themes identified in the study were ownership of condition management, power issues between people with long-term conditions and doctors, and ways in which people seek to manage their doctors.
Conclusions
People with diabetes valued doctors who showed respect for them and their knowledge, and were willing to listen and openly discuss their options. Patients felt that they could and should take responsibility for and control of their day-to-day disease management. They saw doctors as having a role in this process, but when this was lacking, many people felt able to use alternative means to achieve their goal, although the doctor’s function in terms of gatekeeping resources could create difficulties for them in this respect.
doi:10.2196/jmir.2068
PMCID: PMC3510709  PMID: 23137788
Physician-patient relations; consumer health informatics; eHealth; participatory medicine
24.  A Population-Based Evaluation of a Publicly Funded, School-Based HPV Vaccine Program in British Columbia, Canada: Parental Factors Associated with HPV Vaccine Receipt 
PLoS Medicine  2010;7(5):e1000270.
Analysis of a telephone survey by Gina Ogilvie and colleagues identifies the parental factors associated with HPV vaccine uptake in a school-based program in Canada.
Background
Information on factors that influence parental decisions for actual human papillomavirus (HPV) vaccine receipt in publicly funded, school-based HPV vaccine programs for girls is limited. We report on the level of uptake of the first dose of the HPV vaccine, and determine parental factors associated with receipt of the HPV vaccine, in a publicly funded school-based HPV vaccine program in British Columbia, Canada.
Methods and Findings
All parents of girls enrolled in grade 6 during the academic year of September 2008–June 2009 in the province of British Columbia were eligible to participate. Eligible households identified through the provincial public health information system were randomly selected and those who consented completed a validated survey exploring factors associated with HPV vaccine uptake. Bivariate and multivariate analyses were conducted to calculate adjusted odds ratios to identify the factors that were associated with parents' decision to vaccinate their daughter(s) against HPV. 2,025 parents agreed to complete the survey, and 65.1% (95% confidence interval [CI] 63.1–67.1) of parents in the survey reported that their daughters received the first dose of the HPV vaccine. In the same school-based vaccine program, 88.4% (95% CI 87.1–89.7) consented to the hepatitis B vaccine, and 86.5% (95% CI 85.1–87.9) consented to the meningococcal C vaccine. The main reasons for having a daughter receive the HPV vaccine were the effectiveness of the vaccine (47.9%), advice from a physician (8.7%), and concerns about daughter's health (8.4%). The main reasons for not having a daughter receive the HPV vaccine were concerns about HPV vaccine safety (29.2%), preference to wait until the daughter is older (15.6%), and not enough information to make an informed decision (12.6%). In multivariate analysis, overall attitudes to vaccines, the impact of the HPV vaccine on sexual practices, and childhood vaccine history were predictive of parents having a daughter receive the HPV vaccine in a publicly funded school-based HPV vaccine program. By contrast, having a family with two parents, having three or more children, and having more education was associated with a decreased likelihood of having a daughter receive the HPV vaccine.
Conclusions
This study is, to our knowledge, one of the first population-based assessments of factors associated with HPV vaccine uptake in a publicly funded school-based program worldwide. Policy makers need to consider that even with the removal of financial and health care barriers, parents, who are key decision makers in the uptake of this vaccine, are still hesitant to have their daughters receive the HPV vaccine, and strategies to ensure optimal HPV vaccine uptake need to be employed.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
About 10% of cancers in women occur in the cervix, the structure that connects the womb to the vagina. Every year, globally, more than a quarter of a million women die because of cervical cancer, which only occurs after the cervix has been infected with a human papillomavirus (HPV) through sexual intercourse. There are many types of HPV, a virus that infects the skin and the mucosa (the moist membranes that line various parts of the body, including the cervix). Although most people become infected with HPV at some time in their life, most never know they are infected. However, some HPV types cause harmless warts on the skin or around the genital area and several—in particular, HPV 16 and HPV 18, so-called high-risk HPVs—can cause cervical cancer. HPV infections are usually cleared by the immune system, but about 10% of women infected with a high-risk HPV develop a long-term infection that puts them at risk of developing cervical cancer.
Why Was This Study Done?
Screening programs have greatly reduced cervical cancer deaths in developed countries in recent decades by detecting the cancer early when it can be treated; but it would be better to prevent cervical cancer ever developing. Because HPV is necessary for the development of cervical cancer, vaccination of girls against HPV infection before the onset of sexual activity might be one way to do this. Scientists recently developed a vaccine that prevents infection with HPV 16 and HPV 18 (and with two HPVs that cause genital warts) and that should, therefore, reduce the incidence of cervical cancer. Publicly funded HPV vaccination programs are now planned or underway in several countries; but before girls can receive the HPV vaccine, parental consent is usually needed, so it is important to know what influences parental decisions about HPV vaccination. In this study, the researchers undertake a telephone survey to determine the uptake of the HPV vaccine by 11-year-old girls (grade 6) in British Columbia, Canada, and to determine the parental factors associated with vaccine uptake; British Columbia started a voluntary school-based HPV vaccine program in September 2008.
What Did the Researchers Do and Find?
In early 2009, the researchers contacted randomly selected parents of girls enrolled in grade 6 during the 2008–2009 academic year and asked them to complete a telephone survey that explored factors associated with HPV vaccine uptake. 65.1% of the 2,025 parents who completed the survey had consented to their daughter receiving the first dose of HPV vaccine. By contrast, more than 85% of the parents had consented to hepatitis B and meningitis C vaccination of their daughters. Nearly half of the parents surveyed said their main reason for consenting to HPV vaccination was the effectiveness of the vaccine. Conversely, nearly a third of the parents said concern about the vaccine's safety was their main reason for not consenting to vaccination and one in eight said they had been given insufficient information to make an informed decision. In a statistical analysis of the survey data, the researchers found that a positive parental attitude towards vaccination, a parental belief that HPV vaccination had limited impact on sexual practices, and completed childhood vaccination increased the likelihood of a daughter receiving the HPV vaccine. Having a family with two parents or three or more children and having well-educated parents decreased the likelihood of a daughter receiving the vaccine.
What Do These Findings Mean?
These findings provide one of the first population-based assessments of the factors that affect HPV vaccine uptake in a setting where there are no financial or health care barriers to vaccination. By identifying the factors associated with parental reluctance to agree to HPV vaccination for their daughters, these findings should help public-health officials design strategies to ensure optimal HPV vaccine uptake, although further studies are needed to discover why, for example, parents with more education are less likely to agree to vaccination than parents with less education. Importantly, the findings of this study, which are likely to be generalizable to other high-income countries, indicate that there is a continued need to ensure that the public receives credible, clear information about both the benefits and long-term safety of HPV vaccination.
Additional Information
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1000270.
The US National Cancer Institute provides information about cervical cancer for patients and for health professionals, including information on HPV vaccines (in English and Spanish)
The US Centers for Disease Control and Prevention also has information about cervical cancer and about HPV
The UK National Health Service Choices website has pages on cervical cancer and on HPV vaccination
More information about cervical cancer and HPV vaccination is available from the Macmillan cancer charity
ImmunizeBC provides general information about vaccination and information about HPV vaccination in British Columbia
MedlinePlus provides links to additional resources about cervical cancer (in English and Spanish)
doi:10.1371/journal.pmed.1000270
PMCID: PMC2864299  PMID: 20454567
25.  Evaluating the impact of patients' online access to doctors' visit notes: designing and executing the OpenNotes project 
Background
Providers and policymakers are pursuing strategies to increase patient engagement in health care. Increasingly, online sections of medical records are viewable by patients though seldom are clinicians' visit notes included. We designed a one-year multi-site trial of online patient accessible office visit notes, OpenNotes. We hypothesized that patients and primary care physicians (PCPs) would want it to continue and that OpenNotes would not lead to significant disruptions to doctors' practices.
Methods/Design
Using a mixed methods approach, we designed a quasi-experimental study in 3 diverse healthcare systems in Boston, Pennsylvania, and Seattle. Two sites had existing patient internet portals; the third used an experimental portal. We targeted 3 key areas where we hypothesized the greatest impacts: beliefs and attitudes about OpenNotes, use of the patient internet portals, and patient-doctor communication. PCPs in the 3 sites were invited to participate in the intervention. Patients who were registered portal users of participating PCPs were given access to their PCPs' visit notes for one year. PCPs who declined participation in the intervention and their patients served as the comparison groups for the study. We applied the RE-AIM framework to our design in order to capture as comprehensive a picture as possible of the impact of OpenNotes. We developed pre- and post-intervention surveys for online administration addressing attitudes and experiences based on interviews and focus groups with patients and doctors. In addition, we tracked use of the internet portals before and during the intervention.
Results
PCP participation varied from 19% to 87% across the 3 sites; a total of 114 PCPs enrolled in the intervention with their 22,000 patients who were registered portal users. Approximately 40% of intervention and non-intervention patients at the 3 sites responded to the online survey, yielding a total of approximately 38,000 patient surveys.
Discussion
Many primary care physicians were willing to participate in this "real world" experiment testing the impact of OpenNotes on their patients and their practices. Results from this trial will inform providers, policy makers, and patients who contemplate such changes at a time of exploding interest in transparency, patient safety, and improving the quality of care.
doi:10.1186/1472-6947-12-32
PMCID: PMC3351950  PMID: 22500560
Patient access to records; Electronic health records; Primary care physicians; Internet; Medical records; Medical informatics; Patient participation

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