Dataset Information

Quadruple Decision Making for Parkinson's Disease Patients: Combining Expert Opinion, Patient Preferences, Scientific Evidence, and Big Data Approaches to Reach Precision Medicine.

ABSTRACT: Clinical decision making for Parkinson's disease patients is supported by a combination of three distinct information resources: best available scientific evidence, professional expertise, and the personal needs and preferences of patients. All three sources have clear value but also share several important limitations, mainly regarding subjectivity, generalizability and variability. For example, current scientific evidence, especially from controlled clinical trials, is often based on selected study populations, making it difficult to translate the outcome to the care for individual patients in everyday clinical practice. Big data, including data from real-life unselected Parkinson populations, can help to bridge this information gap. Fine-grained patient profiles created from big data have the potential to aid in identifying therapeutic approaches that will be most effective given each patient's individual characteristics, which is particularly important for a disorder characterized by such tremendous interindividual variability as Parkinson's disease. In this viewpoint, we argue that big data approaches should be acknowledged and harnessed, not to replace existing information resources, but rather as a fourth and complimentary source of information in clinical decision making, helping to represent the full complexity of individual patients. We introduce the 'quadruple decision making' model and illustrate its mode of action by showing how this can be used to pursue precision medicine for persons living with Parkinson's disease.

SUBMITTER: van den Heuvel L

PROVIDER: S-EPMC7029360 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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Quadruple Decision Making for Parkinson's Disease Patients: Combining Expert Opinion, Patient Preferences, Scientific Evidence, and Big Data Approaches to Reach Precision Medicine.

van den Heuvel Lieneke L Dorsey Ray R RR Prainsack Barbara B Post Bart B Stiggelbout Anne M AM Meinders Marjan J MJ Bloem Bastiaan R BR

Journal of Parkinson's disease 20200101 1

Clinical decision making for Parkinson's disease patients is supported by a combination of three distinct information resources: best available scientific evidence, professional expertise, and the personal needs and preferences of patients. All three sources have clear value but also share several important limitations, mainly regarding subjectivity, generalizability and variability. For example, current scientific evidence, especially from controlled clinical trials, is often based on selected ...[more]

PMID: 31561387

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Project description:BackgroundCurrently, over 300 languages are spoken in Australian homes. People without proficient English from non-English speaking countries may not receive equitable care if their health care workers do not speak their primary language. Use of professional interpreters is considered the gold standard; however, for a variety of reasons, it is often limited to key aspects of care such as diagnosis and consent. With the emergence of mobile technologies, health care workers are increasingly using digital translation tools to fill this gap. However, many of these technologies have not been developed for health care settings and their use has not been evaluated.ObjectiveThis study aimed to evaluate iPad-compatible language translation apps to determine their suitability for enabling everyday conversations in health care settings.MethodsTranslation apps were identified by searching the Apple iTunes Store and published and grey literature. Criteria for inclusion were that the apps were available at no cost, able to translate at least one of the top 10 languages spoken in Australia, and available for use on iPad. Apps that met inclusion criteria were reviewed in 2 stages. Stage 1 was the feature analysis conducted by 2 independent researchers, where apps were evaluated for offline use, input and output methods, and number of languages. Stage 2 was the analysis of suitability for everyday communication in the health care setting, conducted by 2 independent professionals with expertise in translation and cross-cultural communication. Apps that enabled key aspects of care normally within the realm of professional interpreters, such as assessment, treatment and discharge planning, and seeking consent for medical treatments, were considered unsuitable.ResultsIn total, 15 apps were evaluated. Of these, 8 apps contained voice-to-voice and voice-to-text translation options. In addition, 6 apps were restricted to using preset health phrases, whereas 1 app used a combination of free input and preset phrases. However, 5 apps were excluded before stage 2. In addition, 6 of the 10 remaining apps reviewed in stage 2 were specifically designed for health care translation purposes. Of these, 2 apps were rated as suitable for everyday communication in the health care setting-culturally and linguistically diverse Assist and Talk To Me. Both apps contained simple and appropriate preset health phrases and did not contain conversations that are normally within the realm of professional interpreters.ConclusionsAll iPad-compatible translation apps require a degree of caution and consideration when used in health care settings, and none should replace professional interpreters. However, some apps may be suitable for everyday conversations, such as those that enable preset phrases to be translated on subject matters that do not require a professional interpreter. Further research into the use of translation technology for these types of conversations is needed.

Dataset Information

Quadruple Decision Making for Parkinson's Disease Patients: Combining Expert Opinion, Patient Preferences, Scientific Evidence, and Big Data Approaches to Reach Precision Medicine.

Publications

Quadruple Decision Making for Parkinson's Disease Patients: Combining Expert Opinion, Patient Preferences, Scientific Evidence, and Big Data Approaches to Reach Precision Medicine.

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