Improving patient involvement in the lifecycle of medicines : insights from the EUPATI BE survey

EUPATI Belgium (EUPATI.be) is an informal gathering of local partners who are interested in improving patient involvement in healthcare innovation and medicines research and development. EUPATI.be brings together various stakeholders from different areas related to healthcare including patients, academia and industry. In doing so, we create an innovative collaborative approach where actors from different backgrounds work toward improving patient involvement in medical research, and putting the patient at the center of the Belgian healthcare system. Previously, we performed in-depth interviews with a small group of stakeholders on patient involvement. Here, we elaborate on our previous findings by using a nation-wide survey to inquire into Belgian stakeholders' perception on patient involvement. To this end, an electronic survey was available in French, Dutch and English, and accessible for 11 months. Twelve questions were asked, including 11 multiple choice questions and 1 open question. The latter was thematically analyzed according to the framework method. A total of 117 responses were registered and descriptive statistics were performed. The majority of respondents could be categorized into patient, academia and industry, whereas policy makers, payers, and healthcare professionals were underrepresented. We identified several barriers that hamper patient involvement, which were sometimes more reported by specific stakeholder groups. Next, we found that various stakeholders still consider patient involvement as a passive role, i.e., medical subject in a clinical trial. Respondents also reported that the role of the various stakeholders needed more clarification; this was also confirmed by the level of trust amongst the various stakeholders. Existing and the wish for more collaboration with the various stakeholders was reported by almost all respondents. Based on this survey, we can define the potential of involving patients in the medical research and development in the Belgian landscape. Our results will help to understand and tackle the various barriers that currently hamper patient involvement, whilst highlighting the need for a collaborative landscape from the multi-stakeholder perspective

Conversations with my washing machine: an in-the-wild study of demand-shifting with self-generated energy

Domestic microgeneration is the onsite generation of low- and zero-carbon heat and electricity by private households to meet their own needs. In this paper we explore how an everyday household routine – that of doing laundry – can be augmented by digital technologies to help households with photovoltaic solar energy generation to make better use of self-generated energy. This paper presents an 8-month in-the-wild study that involved 18 UK households in longitudinal energy data collection, prototype deployment and participatory data analysis. Through a series of technology interventions mixing energy feedback, proactive suggestions and direct control the study uncovered opportunities, potential rewards and barriers for families to shift energy consuming household activities and highlights how digital technology can act as mediator between household laundry routines and energy demand-shifting behaviors. Finally, the study provides insights into how a “smart” energy-aware washing machine shapes organization of domestic life and how people “communicate” with their washing machine

Assessing the number of users who are excluded by domestic heating controls

This is the pre-print version of the Article. This Article is also referred to as: "Assessing the 'Design Exclusion' of Heating Controls at a Low-Cost, Low-Carbon Housing Development". - Copyright @ 2011 Taylor & FrancisSpace heating accounts for almost 60% of the energy delivered to housing which in turn accounts for nearly 27% of the total UK's carbon emissions. This study was conducted to investigate the influence of heating control design on the degree of ‘user exclusion’. This was calculated using the Design Exclusion Calculator, developed by the Engineering Design Centre at the University of Cambridge. To elucidate the capability requirements of the system, a detailed hierarchical task analysis was produced, due to the complexity of the overall task. The Exclusion Calculation found that the current design placed excessive demands upon the capabilities of at least 9.5% of the UK population over 16 years old, particularly in terms of ‘vision’, ‘thinking’ and ‘dexterity’ requirements. This increased to 20.7% for users over 60 years old. The method does not account for the level of numeracy and literacy and so the true exclusion may be higher. Usability testing was conducted to help validate the results which indicated that 66% of users at a low-carbon housing development could not programme their controls as desired. Therefore, more detailed analysis of the cognitive demands placed upon the users is required to understand where problems within the programming process occur. Further research focusing on this cognitive interaction will work towards a solution that may allow users to behave easily in a more sustainable manner

Acupuncture as a Complementary Therapy for Cancer Care: Acceptability and Preferences of Patients and Informal Caregivers

Background: Acupuncture can effectively manage cancer-related side effects, for both patients undergoing treatment and for cancer survivors. It may also be effective in managing physiological and psychological symptoms common among informal caregivers of cancer patients. Objectives: The aim of this survey was to explore the acceptability and preferences of cancer patients, cancer survivors, and their informal caregivers in relation to acupuncture. Methods: The survey was conducted from 20th November to 27th November 2018. The questionnaire was developed to explore acceptability and preferences, including motivation, symptoms to be addressed, and practical issues (location, cost, etc.), in relation to acupuncture. Results: The survey response rate was 94.5% in cancer patients and cancer survivors and 100% in caregivers. Acceptability of acupuncture was 34.5% (n = 40/116) and 48.0% (n = 26/54) in cancer patients and caregivers, respectively. About 52.5% (n = 21/40) of patients preferred to undergo acupuncture at the day center clinic, whereas caregivers had no specific preference. Patients and cancer survivors would use acupuncture for symptoms of fatigue (60%), listlessness (57.5%), and pain (47.5%). Informal caregivers expressed an interest in using acupuncture for their pain, stress, and sleeping difficulties 48.0% (n = 26/54). Conclusion: Cancer patients, cancer survivors, and informal caregivers would accept acupuncture as a complementary therapy. This openness and preference to acupuncture provide the foundations for this complementary therapy to be incorporated into holistic and supportive cancer care, both for patients and those supporting them

An assessment of orofacial clefts in Tanzania

<p>Abstract</p> <p>Background</p> <p>Clefts of the lip (CL), the palate (CP), or both (CLP) are the most common orofacial congenital malformations found among live births, accounting for 65% of all head and neck anomalies. The frequency and pattern of orofacial clefts in different parts of the world and among different human groups varies widely. Generally, populations of Asian or Native American origin have the highest prevalence, while Caucasian populations show intermediate prevalence and African populations the lowest. To date, little is known regarding the epidemiology and pattern of orofacial clefts in Tanzania.</p> <p>Methods</p> <p>A retrospective descriptive study was conducted at Bugando Medical Centre to identify all children with orofacial clefts that attended or were treated during a period of five years. Cleft lip and/or palate records were obtained from patient files in the Hospital's Departments of Surgery, Paediatrics and medical records. Age at presentation, sex, region of origin, type and laterality of the cleft were recorded. In addition, presence of associated congenital anomalies or syndromes was recorded.</p> <p>Results</p> <p>A total of 240 orofacial cleft cases were seen during this period. Isolated cleft lip was the most common cleft type followed closely by cleft lip and palate (CLP). This is a departure from the pattern of clefting reported for Caucasian and Asian populations, where CLP or isolated cleft palate is the most common type. The distribution of clefts by side showed a statistically significant preponderance of the left side (43.7%) (χ²= 92.4, p < 0.001), followed by the right (28.8%) and bilateral sides (18.3%). Patients with isolated cleft palate presented at very early age (mean age 1.00 years, SE 0.56). Associated congenital anomalies were observed in 2.8% of all patients with orofacial clefts, and included neural tube defects, Talipes and persistent ductus arteriosus.</p> <p>Conclusions</p> <p>Unilateral orofacial clefts were significantly more common than bilateral clefts; with the left side being the most common affected side. Most of the other findings did not show marked differences with orofacial cleft distributions in other African populations.</p