Patient Involvement In Development Research Articles

Investigating the national implementation of SMS and mobile messaging in population screening (The SIPS study).

The increasing use of mobile messaging within healthcare, poses challenges for screening programmes, which involve communicating with large, diverse populations. This modified Delphi study aimed to create guidance regarding the use of mobile messaging for screening programmes, to facilitate greater, and equitable screening uptake. Initial recommendations were derived from a literature review, expert scoping questionnaire, public consultation, and discussion with relevant national organisations. Experts from the fields of public health, screening commissioning, industry and academia voted upon the importance and feasibility of these recommendations across two consensus rounds, using a 5-point Likert scale. Items reaching consensus, defined a priori at 70%, on importance and feasibility formed 'core' recommendations. Those reaching this threshold on importance only, were labelled 'desirable'. All items were subsequently discussed at an expert meeting to confirm suitability. Of the initial 101 items, 23 reached consensus regarding importance and feasibility. These 'core' items were divided across six domains: message content, timing, delivery, evaluation, security, and research considerations. 'Core' items such as explicitly specifying the sender and the role of patient involvement in development of screening message research had the highest agreement. A further 17 'desirable' items reached consensus regarding importance, but not feasibility, including the integration into GP services to enable telephone verification. These findings forming national guidance for services, will enable programmes to overcome implementation challenges and facilitate uptake of screening invitations. By providing a list of desirable items, this study provides areas for future consideration, as technological innovation in messaging continues to grow. NIHR Imperial Patient Safety Translational Research Centre.

Examining Patient Engagement in Chatbot Development Approaches for Healthy Lifestyle and Mental Wellness Interventions: Scoping Review.

Chatbots are growing in popularity as they offer a range of potential benefits to end users and service providers. Our scoping review aimed to explore studies that used 2-way chatbots to support healthy eating, physical activity, and mental wellness interventions. Our objectives were to report the nontechnical (eg, unrelated to software development) approaches for chatbot development and to examine the level of patient engagement in these reported approaches. Our team conducted a scoping review following the framework proposed by Arksey and O'Malley. Nine electronic databases were searched in July 2022. Studies were selected based on our inclusion and exclusion criteria. Data were then extracted and patient involvement was assessed. 16 studies were included in this review. We report several approaches to chatbot development, assess patient involvement where possible, and reveal the limited detail available on reporting of patient involvement in the chatbot implementation process. The reported approaches for development included: collaboration with knowledge experts, co-design workshops, patient interviews, prototype testing, the Wizard of Oz (WoZ) procedure, and literature review. Reporting of patient involvement in development was limited; only 3 of the 16 included studies contained sufficient information to evaluate patient engagement using the Guidance for Reporting Involvement of Patients and Public (GRIPP2). The approaches reported in this review and the identified limitations can guide the inclusion of patient engagement and the improved documentation of engagement in the chatbot development process for future health care research. Given the importance of end user involvement in chatbot development, we hope that future research will more systematically report on chatbot development and more consistently and actively engage patients in the codevelopment process.

CN11 Patient involvement in development of digital pathway eHealth service

The use of eHealth services has increased significantly in recent years. According to earlier publications the eHealth services support patient´s self-management and involvement in their own treatment. The eHealth services are useful in searching for information on cancer disease. They also allow the patients to view a part of their own medical record and to communicate with a healthcare professional regardless of time and place. In eHealth services, patients value simultaneous access to information and healthcare professionals´ support.

PHP51 - The Professionals’ Perspective of Patient Involvement in Market Access: A Descriptive Analysis

Pharmaceutical product development stages include; pre-launch, peri-launch and post launch. There is growing evidence to support patient involvement in pharmaceutical product development and their access to such products. However, there is no consensus regarding the stage in which patients should be involved into the development of products, and how to bring them to market. This study examined the views of professionals regarding the patient perspective of market access. A questionnaire survey was used for the present study. This questionnaire was administered at the ISPOR conference, Glasgow to 104 participants. Descriptive analysis was carried out to investigate the stage in which patients should be involved in market access. Thirty-three participants were Consultants, 46 had Pharmaceutical background, 12 were Healthcare professionals, 11 were from Academia and 2 participants were Payers. 47.6% of the participants believed that patients should be involved, whilst 52.4% believed that they should not be involved. Of the 47.6%, five (4.8%) of the participants (4 from Pharma and 1 from academia) believed that patients should be involved at pre-launch stage. Similarly, 5 (4.8%) of the participants (4 from Pharma and 1 from academia) believed that patients should be involved at peri-launch. 38 (36.5%) of the participants (23 with Pharma background, 6 consultants, 5 healthcare professionals and 4 academia) agreed that patients should be involved at post-launch stage. The findings suggest that majority of the professionals believed that patients should be involved at post-launch stage. Patient involvement in the development of drugs and early engagement with reimbursement agencies like National Health and Care Excellence may help to facilitate resource allocation to improve their health outcomes through access to timely intervention. Future studies are required to explore the views of the patients of their involvement in pharmaceutical product development, and access to the product.

Patient involvement in the development of patient-reported outcome measures: The developers\u2019 perspective

BackgroundPatient-reported outcome measures (PROMs) are increasingly used in health care. To capture the patient’s perspective, patient involvement in PROM development is needed. As earlier research showed varying degrees of patient involvement in PROM development, this study aimed to investigate why PROM developers do or do not involve patients, how patients can be successfully involved and what the negative aspects and benefits of patient involvement are.MethodsPROM developers who, according to an earlier scoping review, involved patients in at least two phases of PROM development or did not involve patients at all, were contacted for a telephone interview. The interviews were recorded, transcribed and analysed using a general inductive approach.ResultsFrom the PROM developers who involved patients, 21 developers were interviewed and three answered questions via e-mail. Most developers considered patient involvement necessary to create a valid questionnaire and relied on guidelines, personal experience and practical considerations for choosing a qualitative method. Negative aspects of patient involvement were mainly time investment and budget impact. One developer who did not involve patients was interviewed. Two developers sent back answers via e-mail. These developers did not involve patients because of limited resources or because no benefits were expected.ConclusionAlthough PROM developers agree that patient involvement is necessary, a lack of resources can be a stumbling block. Most developers rely on guidelines, personal experience or practical considerations for choosing a qualitative method. Although this may be a good place to start, to optimize patient involvement developers should explicitly think about which methods would suit their study.

Development of a Symptom-Based Patient-Reported Outcome Instrument for Functional Dyspepsia: A Preliminary Conceptual Model and an Evaluation of the Adequacy of Existing Instruments.

ObjectivesThe aim was to document, from the perspective of the empirical literature, the primary symptoms of functional dyspepsia (FD), evaluate the extent to which existing questionnaires target those symptoms, and, finally, identify any missing evidence that would impact the questionnaires’ use in regulated clinical trials to assess treatment efficacy claims intended for product labeling.MethodsA literature review was conducted to identify the primary symptoms of FD and existing symptom-based FD patient-reported outcome (PRO) instruments. Following a database search, abstracts were screened and articles were retrieved for review. The primary symptoms of FD were organized into a conceptual model and the PRO instruments were evaluated for conceptual coverage as well as compared against evidentiary requirements presented in the FDA’s PRO Guidance for Industry.ResultsFifty-six articles and 16 instruments assessing FD symptoms were reviewed. Concepts listed in the Rome III criteria for FD (n = 7), those assessed by existing FD instruments (n = 34), and symptoms reported by patients in published qualitative research (n = 6) were summarized in the FD conceptual model. Except for vomiting, all of the identified symptoms from the published qualitative research reports were also specified in the Rome III criteria. Only three of the 16 instruments, the Dyspepsia Symptom Severity Index (DSSI), Nepean Dyspepsia Index (NDI), and Short-Form Nepean Dyspepsia Index (SF-NDI), measure all seven FD symptoms defined by the Rome III criteria. Among these three, each utilizes a 2-week recall period and 5-point Likert-type scale, and had evidence of patient involvement in development. Despite their coverage, when these instruments were evaluated in light of regulatory expectations, several issues jeopardized their potential qualification for substantiation of a labeling claim.ConclusionsNo existing PRO instruments that measured all seven symptoms adhered to the regulatory principles necessary to support product labeling. As such, the development of a new FD symptom PRO instrument is supported.

Patient involvement in the development of patient-reported outcome measures: a scoping review.

BackgroundPatient‐reported outcome measures (PROMs) measure patients’ perspectives on health outcomes and are increasingly used in health care. To capture the patient's perspective, it is essential that patients are involved in PROM developmentObjectiveThis article reviews in what ways and to what extent patients are involved in PROM development and whether patient involvement has increased over time.Search strategyLiterature was searched in PubMed, EMBASE, MEDLINE and the Cochrane Methodology Register.Inclusion criteriaStudies were included if they described a new PROM development.Data extractionBasic information and information regarding patient involvement in development phases was recorded.Main resultsA total of 189 studies, describing the development of 193 PROMs, were included. Most PROMs were meant for chronic disease patients (n = 59) and measured quality of life (n = 28). In 25.9% of the PROM development studies, no patients were involved. Patients were mostly involved during item development (58.5%), closely followed by testing for comprehensibility (50.8%), while patient involvement in determining which outcome to measure was minimal (10.9%). Some patient involvement took place in the development of most PROMs, but in only 6.7% patients were involved in all aspects of the development. Patient involvement did not increase with time.ConclusionsAlthough patient involvement in PROM development is essential to develop valid patient‐centred PROMs, patients are not always involved. When patients are involved, their level of involvement varies considerably. These variations suggest that further attention to building and/or disseminating consensus on requirements for patient involvement in PROM development is necessary.

Deltar pasientene i utviklingen av kliniske retningslinjer i Norge?

The National Health Plan (2007-2010) establishes that users should participate in development of all parts of the health services. We have investigated whether and how patients participate in development of guidelines in Norway. Nine doctors and one nurse, trained in the AGREE instrument (an international tool for evaluation of clinical guidelines), evaluated patient involvement in development of key guidelines in Norway, on a scale from 1 (patient views not mentioned) to 4 (patients participate). 127 guidelines (published in the period 2000-2009) were assessed. The average score for extent of patient involvement was 1.8. Guidelines from public institutions scored higher than those developed by professional medical organizations; mean 2.4 (95 % CI 2.2-2.7) versus 1.5 (1.2-1.7). Guidelines on cancer, mental health, musculoskeletal disorders and pediatrics had the highest scores. There were no differences between older (2000-05) and more recent (2006-09) guidelines. Norwegian guidelines developers seldom involve patients in guideline development. Patient views are mainly not taken into account in literature searches or systematic collection of information.