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1.
BMJ Lead ; 2023 Oct 13.
Article in English | MEDLINE | ID: mdl-37833053

ABSTRACT

OBJECTIVES: Although front-line nurses and staff are uniquely positioned to identify the inefficiencies and gaps in care delivery, formal processes are not always in place to hear from those very employees. DESIGN: We established a scalable process that embodies open innovation principles, to broaden and distribute the innovation locus. SETTING: Massachusetts General Hospital, Boston, MA. PARTICPITANTS: We invited 8800+ nurses and other direct caregivers to participate in organisational problem solving. INTERVENTIONS: We solicited employees to (1) identify pain points and develop solutions and (2) crowd vote to indicate which ideas they want to see implemented. RESULTS: 177 employees submitted 225 ideas, and 928 cast a vote. The 40 participants who submitted top-voted ideas were invited to develop a detailed implementation plan; of those, 27 submitted one. Four ideas emerged as winners. CONCLUSIONS: Formulating a clear call for ideas, securing leadership buy-in and generating excitement about the process were essential to our efforts. Challenges associated with opening the innovation process involved managing a large volume of participants and submissions, and providing on-the-go training to nurses and staff who were not used to being asked to participate in organisational problem solving.

2.
Article in English | MEDLINE | ID: mdl-37461167

ABSTRACT

BACKGROUND: Amyotrophic lateral sclerosis (ALS) is a rare disease with urgent need for improved treatment. Despite the acceleration of research in recent years, there is a need to understand the full natural history of the disease. As only 40% of people living with ALS are eligible for typical clinical trials, clinical trial datasets may not generalize to the full ALS population. While biomarker and cohort studies have more generous inclusion criteria, these too may not represent the full range of phenotypes, particularly if the burden for participation is high. To permit a complete understanding of the heterogeneity of ALS, comprehensive data on the full range of people with ALS is needed. METHODS: The ALS Natural History Consortium (ALS NHC) consists of nine ALS clinics and was created to build a comprehensive dataset reflective of the ALS population. At each clinic, most patients are asked to participate and about 95% do. After obtaining consent, a minimum dataset is abstracted from each participant's electronic health record. Participant burden is therefore minimal. RESULTS: Data on 1925 ALS patients were submitted as of 9 December 2022. ALS NHC participants were more heterogeneous relative to anonymized clinical trial data from the Pooled Resource Open-Access ALS Clinical Trials (PRO-ACT) database. The ALS NHC includes ALS patients of older age of onset and a broader distribution of El Escorial categories, than the PRO-ACT database. CONCLUSIONS: ALS NHC participants had a higher diversity of diagnostic and demographic data compared to ALS clinical trial participants.Key MessagesWhat is already known on this topic: Current knowledge of the natural history of ALS derives largely from regional and national registries that have broad representation of the population of people living with ALS but do not always collect covariates and clinical outcomes. Clinical studies with rich datasets of participant characteristics and validated clinical outcomes have stricter inclusion and exclusion criteria that may not be generalizable to the full ALS population.What this study adds: To bridge this gap, we collected baseline characteristics for a sample of the population of people living with ALS seen at a consortium of ALS clinics that collect extensive, pre-specified participant-level data, including validated outcome measures.How this study might affect research, practice, or policy: A clinic-based longitudinal dataset can improve our understanding of the natural history of ALS and can be used to inform the design and analysis of clinical trials and health economics studies, to help the prediction of clinical course, to find matched controls for open label extension trials and expanded access protocols, and to document real-world evidence of the impact of novel treatments and changes in care practice.

3.
PLoS One ; 10(3): e0120521, 2015.
Article in English | MEDLINE | ID: mdl-25837602

ABSTRACT

This paper identifies trends within and relationships between the amount of participation and the quality of contributions in three crowdsourced surveys. Participants were asked to perform a collective problem solving task that lacked any explicit incentive: they were instructed not only to respond to survey questions but also to pose new questions that they thought might-if responded to by others-predict an outcome variable of interest to them. While the three surveys had very different outcome variables, target audiences, methods of advertisement, and lengths of deployment, we found very similar patterns of collective behavior. In particular, we found that: the rate at which participants submitted new survey questions followed a heavy-tailed distribution; the distribution in the types of questions posed was similar; and many users posed non-obvious yet predictive questions. By analyzing responses to questions that contained a built-in range of valid response we found that less than 0.2% of responses lay outside of those ranges, indicating that most participants tend to respond honestly to surveys of this form, even without explicit incentives for honesty. While we did not find a significant relationship between the quantity of participation and the quality of contribution for both response submissions and question submissions, we did find several other more nuanced participant behavior patterns, which did correlate with contribution in one of the three surveys. We conclude that there exists an optimal time for users to pose questions early on in their participation, but only after they have submitted a few responses to other questions. This suggests that future crowdsourced surveys may attract more predictive questions by prompting users to pose new questions at specific times during their participation and limiting question submission at non-optimal times.


Subject(s)
Crowdsourcing , Models, Statistical , Surveys and Questionnaires , Algorithms , Crowdsourcing/methods , Humans
4.
Am J Orthop (Belle Mead NJ) ; 40(9): E159-62, 2011 Sep.
Article in English | MEDLINE | ID: mdl-22022680

ABSTRACT

Trochanteric bursitis is a common disorder that is characterized by inflammation of the bursa, superficial to the greater trochanter of the femur, leading to pain in the lateral hip, and often occurs because of acute trauma or repetitive friction involving the iliotibial band, the greater trochanter, and the bursa. In the study reported here, we hypothesized that the increased incidence of bursitis may be the result of the increased prominence of the trochanter in relation to the wings of the iliac crest. Distances between the outermost edges of trochanters and iliac wings were measured in 202 patients from the University of North Carolina Health Care System-101 without a known diagnosis and 101 with a clinical diagnosis of trochanteric bursitis. To determine significance, t tests for nonpaired data were used. Mean (SD) difference between trochanter and iliac wing widths was 28 (20) mm in the group diagnosed with trochanteric bursitis and 17 (18) mm in the control group. The difference between the groups in this regard was significant (P<.00005). In addition, mean (SD) ratio of trochanter widths to iliac wing widths was 1.09 (.06) in the bursitis group and 1.05 (.06) in the control group. The difference between these groups was significant (P<.0005) in this regard as well. Having trochanters wider in relation to iliac wings was associated with the diagnosis of trochanteric bursitis.


Subject(s)
Bursa, Synovial/diagnostic imaging , Bursitis/diagnostic imaging , Femur/diagnostic imaging , Hip Joint , Ilium/diagnostic imaging , Adolescent , Adult , Aged , Aged, 80 and over , Bursitis/epidemiology , Bursitis/etiology , Diagnosis, Differential , Female , Follow-Up Studies , Humans , Incidence , Male , Middle Aged , Radiography , Retrospective Studies , Severity of Illness Index , Young Adult
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