The James Lind Alliance is a UK-based non-profit making initiative, established in 2004. [1] It was established to bring patients, carers and clinicians together, in Priority Setting Partnerships, to identify and prioritise unanswered questions or evidence uncertainties that they agree are the most important. The intention is to ensure that those who fund health research are aware of what matters to patients, carers and clinicians who need to use the research in their everyday lives.
The National Institute for Health and Care Research (NIHR) funds the coordination of the JLA, but Priority Setting Partnerships find their own resources to fund their partnership. In 2016 the James Lind Alliance was granted the Societal Award of the Foundation Federation of Dutch Medical Scientific Societies (Federa) for their initiative to bring patients into partnerships for research priorities. [2]
Research on the effects of treatments often overlooks the shared interests of patients and clinicians. As a result, questions they both consider important are not addressed. The pharmaceutical and medical technology industries and academia play essential roles in developing new treatments, but their priorities are not necessarily the same as those of patients and clinicians. For this reason many areas of potentially valuable research are neglected. Bringing patients and clinicians together to jointly prioritise unanswered questions is thought to be rare. [3]
The James Lind Alliance brings together patients and patient representatives, carers and clinicians, as individuals or represented by groups, to form Priority Setting Partnerships, focusing on specific health conditions or settings. For example, the Asthma Priority Setting Partnership was led by Asthma UK and the British Thoracic Society, while the Urinary Incontinence Priority Setting Partnership was led by the Bladder & Bowel Foundation and the Cochrane Incontinence Group, part of the Cochrane Collaboration. [4]
Priority Setting Partnerships work together to gather uncertainties from patients, carers and clinicians. The uncertainties are all checked to ensure they cannot be answered by existing knowledge, research or sources of information.
The uncertainties then go through a process of prioritisation, which culminates in a top ten list of priorities for research, shared by patients, carers and clinicians. To date, the process has been completed for over 160 health areas in the UK and internationally, including Urinary Incontinence, Anaesthesia and Perioperative Care, Living With and Beyond Cancer, Intensive Care, Stroke, Cystic Fibrosis, Oral and Dental Health, Mental Health in Children and Young People, Cardiac Arrest (Canada), Congenital Heart Disease, Problematic Hip Replacement, Palliative and End of Life Care, Veterans' Health, and Surgery for Common Shoulder Problems.
The Alliance is named after a pioneer of clinical trials, James Lind (1716–1794). Two hundred and fifty years ago, there were many conflicting ideas and unanswered questions about how to treat the deadly disease scurvy. Lind, a Scottish naval surgeon, decided to confront this uncertainty by treating his patients within a clinical trial comparing six of the proposed remedies. His trial showed that oranges and lemons were dramatically better than the other supposed treatments. [5]
Evidence-based medicine (EBM) is "the conscientious, explicit and judicious use of current best evidence in making decisions about the care of individual patients." The aim of EBM is to integrate the experience of the clinician, the values of the patient, and the best available scientific information to guide decision-making about clinical management. The term was originally used to describe an approach to teaching the practice of medicine and improving decisions by individual physicians about individual patients.
Physical therapy (PT), also known as physiotherapy, is a healthcare profession, as well as the care provided by physical therapists who promote, maintain, or restore health through patient education, physical intervention, disease prevention, and health promotion. Physical therapist is the term used for such professionals in the United States, and physiotherapist is the term used in many other countries.
Urinary incontinence (UI), also known as involuntary urination, is any uncontrolled leakage of urine. It is a common and distressing problem, which may have a large impact on quality of life. It has been identified as an important issue in geriatric health care. The term enuresis is often used to refer to urinary incontinence primarily in children, such as nocturnal enuresis. UI is an example of a stigmatized medical condition, which creates barriers to successful management and makes the problem worse. People may be too embarrassed to seek medical help, and attempt to self-manage the symptom in secrecy from others.
Fecal incontinence (FI), or in some forms, encopresis, is a lack of control over defecation, leading to involuntary loss of bowel contents, both liquid stool elements and mucus, or solid feces. When this loss includes flatus (gas), it is referred to as anal incontinence. FI is a sign or a symptom, not a diagnosis. Incontinence can result from different causes and might occur with either constipation or diarrhea. Continence is maintained by several interrelated factors, including the anal sampling mechanism, and incontinence usually results from a deficiency of multiple mechanisms. The most common causes are thought to be immediate or delayed damage from childbirth, complications from prior anorectal surgery, altered bowel habits. An estimated 2.2% of community-dwelling adults are affected. However, reported prevalence figures vary. A prevalence of 8.39% among non-institutionalized U.S adults between 2005 and 2010 has been reported, and among institutionalized elders figures come close to 50%.
In urinary catheterization, a latex, polyurethane, or silicone tube known as a urinary catheter is inserted into the bladder through the urethra to allow urine to drain from the bladder for collection. It may also be used to inject liquids used for treatment or diagnosis of bladder conditions. A clinician, often a nurse, usually performs the procedure, but self-catheterization is also possible. A catheter may be in place for long periods of time or removed after each use.
Biofeedback is the technique of gaining greater awareness of many physiological functions of one's own body by using electronic or other instruments, and with a goal of being able to manipulate the body's systems at will. Humans conduct biofeedback naturally all the time, at varied levels of consciousness and intentionality. Biofeedback and the biofeedback loop can also be thought of as self-regulation. Some of the processes that can be controlled include brainwaves, muscle tone, skin conductance, heart rate and pain perception.
Motivational interviewing (MI) is a counseling approach developed in part by clinical psychologists William R. Miller and Stephen Rollnick. It is a directive, client-centered counseling style for eliciting behavior change by helping clients to explore and resolve ambivalence. Compared with non-directive counseling, it is more focused and goal-directed, and departs from traditional Rogerian client-centered therapy through this use of direction, in which therapists attempt to influence clients to consider making changes, rather than engaging in non-directive therapeutic exploration. The examination and resolution of ambivalence is a central purpose, and the counselor is intentionally directive in pursuing this goal. MI is most centrally defined not by technique but by its spirit as a facilitative style for interpersonal relationship.
Stress incontinence, also known as stress urinary incontinence (SUI) or effort incontinence is a form of urinary incontinence. It is due to inadequate closure of the bladder outlet by the urethral sphincter.
Sir Iain Geoffrey Chalmers is a British health services researcher, one of the founders of the Cochrane Collaboration, and coordinator of the James Lind Initiative, which includes the James Lind Library and James Lind Alliance.
Overactive bladder (OAB) is a common condition where there is a frequent feeling of needing to urinate to a degree that it negatively affects a person's life. The frequent need to urinate may occur during the day, at night, or both. Loss of bladder control may occur with this condition. Overactive bladder affects approximately 11% of the population and more than 40% of people with overactive bladder have incontinence. Conversely, about 40% to 70% of urinary incontinence is due to overactive bladder. Overactive bladder is not life-threatening, but most people with the condition have problems for years.
Health services research (HSR) became a burgeoning field in North America in the 1960s, when scientific information and policy deliberation began to coalesce. Sometimes also referred to as health systems research or health policy and systems research (HPSR), HSR is a multidisciplinary scientific field that examines how people get access to health care practitioners and health care services, how much care costs, and what happens to patients as a result of this care. HSR utilizes all qualitative and quantitative methods across the board to ask questions of the healthcare system. It focuses on performance, quality, effectiveness and efficiency of health care services as they relate to health problems of individuals and populations, as well as health care systems and addresses wide-ranging topics of structure, processes, and organization of health care services; their use and people's access to services; efficiency and effectiveness of health care services; the quality of healthcare services and its relationship to health status, and; the uses of medical knowledge.
A sacral nerve stimulator is a small device usually implanted in the buttocks of people who have problems with bladder and/or bowel control. This device is implanted in the buttock and connected to the sacral nerve S3 by a wire. The device uses sacral nerve stimulation to stop urges to defecate and urinate by sending signals to the sacral nerve. The patient is able to control their bladder and/or bowel via an external device similar to a remote control.
As populations age, caring for people with dementia has become more common. Elderly caregiving may consist of formal care and informal care. Formal care involves the services of community and medical partners, while informal care involves the support of family, friends, and local communities. In most mild-to-medium cases of dementia, the caregiver is a spouse or an adult child. Over a period of time, more professional care in the form of nursing and other supportive care may be required medically, whether at home or in a long-term care facility. There is evidence to show that case management can improve care for individuals with dementia and the experience of their caregivers. Furthermore, case management may reduce overall costs and institutional care in the medium term. Millions of people living in the United States take care of a friend or family member with Alzheimer’s disease or a related dementia.
Comparative effectiveness research (CER) is the direct comparison of existing health care interventions to determine which work best for which patients and which pose the greatest benefits and harms. The core question of comparative effectiveness research is which treatment works best, for whom, and under what circumstances. Engaging various stakeholders in this process, while difficult, makes research more applicable through providing information that improves patient decision making.
Treatment for prostate cancer may involve active surveillance, surgery, radiation therapy – including brachytherapy and external-beam radiation therapy, proton therapy, high-intensity focused ultrasound (HIFU), cryosurgery, hormonal therapy, chemotherapy, or some combination. Treatments also extend to survivorship based interventions. These interventions are focused on five domains including: physical symptoms, psychological symptoms, surveillance, health promotion and care coordination. However, a published review has found only high levels of evidence for interventions that target physical and psychological symptom management and health promotion, with no reviews of interventions for either care coordination or surveillance. The favored treatment option depends on the stage of the disease, the Gleason score, and the PSA level. Other important factors include the man's age, his general health, and his feelings about potential treatments and their possible side-effects. Because all treatments can have significant side-effects, such as erectile dysfunction and urinary incontinence, treatment discussions often focus on balancing the goals of therapy with the risks of lifestyle alterations.
Alessandro Liberati was an Italian healthcare researcher and clinical epidemiologist, and founder of the Italian Cochrane Centre.
The Patient-Reported Outcomes Measurement Information System (PROMIS) provides clinicians and researchers access to reliable, valid, and flexible measures of health status that assess physical, mental, and social well–being from the patient perspective. PROMIS measures are standardized, allowing for assessment of many patient-reported outcome domains—including pain, fatigue, emotional distress, physical functioning and social role participation—based on common metrics that allow for comparisons across domains, across chronic diseases, and with the general population. Further, PROMIS tools allow for computer adaptive testing, efficiently achieving precise measurement of health status domains with few items. There are PROMIS measures for both adults and children. PROMIS was established in 2004 with funding from the National Institutes of Health (NIH) as one of the initiatives of the NIH Roadmap for Medical Research.
If medical treatment is not effective, surgery may need to be performed for benign prostatic hyperplasia.
Dr. Veronica Thierry Mallett, M.D., MMM, is a women's health physician in the United States known for her work in urogynecology, specifically with respect to genital organ prolapse and urinary incontinence, and for her efforts in reducing health disparities.
Public involvement in medical research refers to the practice where people with health conditions (patients), carers and members of the public work together with researchers and influence what is research and how. Involvement is not the same as participation which means taking part in research, for example taking a drug in a clinical trial.