Designing a tool to support patient and public involvement in research projects: the Involvement Matrix

Smits, Dirk-Wouter; Meeteren, Karen van; Klem, Martijn; Alsem, Mattijs; Ketelaar, Marjolijn

doi:10.1186/s40900-020-00188-4

Cited by 112 publications

(155 citation statements)

References 38 publications

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“…2. Identify if reviews in certain journals, countries, or disciplines are more likely to include patient or public partner authors. 3. Determine useful search terms to find reviews with patient or public partner authors, based on how such authors are described in affiliations, abstracts, or article texts.…”

Section: Objectivesmentioning

confidence: 99%

See 1 more Smart Citation

Identification and Reporting of Patient and Public Partner Authorship on Knowledge Syntheses: Rapid Review

Ellis¹,

Kitchin²,

Vis-Dunbar³

2021

J Particip Med

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Background Patient and public involvement (PPI) in health research is an area of growing interest. Several studies have examined the use and impact of PPI in knowledge syntheses (systematic, scoping, and related reviews); however, few studies have focused specifically on the patient or public coauthorship of such reviews. Objective This study seeks to identify published systematic and scoping reviews coauthored by patient or public partners and examine the characteristics of these coauthored reviews, such as which journals publish them, geographic location of research teams, and terms used to describe patient or public partner authors in affiliations, abstracts, or article text. Methods We searched CAB Direct, CINAHL, Cochrane Database of Systematic Reviews (Ovid), Embase (Ovid), MEDLINE (Ovid), and PsycInfo from 2011 to May 2019, with a supplementary search of several PPI-focused databases. We refined the Ovid MEDLINE search by examining frequently used words and phrases in relevant search results and searched Ovid MEDLINE using the modified search strategy in June 2020. Results We screened 13,998 results and found 37 studies that met our inclusion criteria. In line with other PPI research, we found that a wide range of terms were used for patient and public authors in author affiliations. In some cases, partners were easy to identify with titles such as patient, caregiver or consumer representative, patient partner, expert by experience, citizen researcher, or public contributor. In 11% (n=4) of studies, they were identified as members of a panel or advisory council. In 27% (n=10) of articles, it was either impossible or difficult to tell whether an author was a partner solely from the affiliation, and confirmation was found elsewhere in the article. We also investigated where in the reviews the partner coauthors’ roles were described, and when possible, what their specific roles were. Often, there was little or no information about which review tasks the partner coauthors contributed to. Furthermore, only 14% (5/37) of reviews mentioned patient or public involvement as authors in the abstract; involvement was often only indicated in the author affiliation field or in the review text (most often in the methods or contributions section). Conclusions Our findings add to the evidence that searching for coproduced research is difficult because of the diversity of terms used to describe patient and public partners, and the lack of consistent, detailed reporting about PPI. For better discoverability, we recommend ensuring that patient and public authorships are indicated in commonly searched database fields. When patient and public-authored research is easier to find, its impact will be easier to measure.

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Section: Objectivesmentioning

confidence: 99%

“…Multiple frameworks have been proposed to improve the reporting of patients' roles and levels of involvement in research [3][4][5][6][7][8][9]. Notably, in primary research, the GRIPP (Guidance for Reporting Involvement of Patients and Public) checklist was developed in 2011 [2].…”

Section: Introductionmentioning

confidence: 99%

Identification and Reporting of Patient and Public Partner Authorship on Knowledge Syntheses: Rapid Review

Ellis¹,

Kitchin²,

Vis-Dunbar³

2021

J Particip Med

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“…Patients and their caregivers have not only been involved in the development of ALS Home-monitoring and Coaching [ 5 , 9 ], but they are also involved in each step of the implementation process. They will be the end-users of the innovation and they can provide a unique and complementary perspective based on their own expertise and experiences [ 33 ]. Also other people who will be affected by the intended changes, such as physiatrists, allied health professionals, managers, and schedulers will be involved in the implementation process.…”

Section: Discussionmentioning

confidence: 99%

Implementation and evaluation of an e-health innovation for personalized care for patients with amyotrophic lateral sclerosis (ALS): protocol for a participatory action research study

Dontje

Reenen²,

Visser-Meily

et al. 2021

Implement Sci Commun

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Background In the absence of a cure for amyotrophic lateral sclerosis (ALS), a progressive neurodegenerative disease, treatment consists of symptomatic management by a multidisciplinary healthcare team and is mainly aimed at optimizing patients’ quality of life. Because the course of the disease is often erratic and varies between patients, it is imperative for patients with ALS to be closely monitored. E-health innovations that can monitor disease progression remotely have great potential to tailor the care to the needs of individual patients with ALS. Therefore, the e-health innovation “ALS Home-monitoring and Coaching” was developed employing a user-centered design process and implemented at the University Medical Center Utrecht, the Netherlands in 2017. Because ALS Home-monitoring and Coaching was shown to be feasible and well received by patients and healthcare professionals at University Medical Centre Utrecht, we aim to implement this e-health innovation nationwide, starting with 10 ALS care teams in different rehabilitation settings spread across the Netherlands. Methods This research focuses on the implementation process and the user experiences with ALS Home-monitoring and Coaching of both patients and healthcare professionals. We will use a participatory action research approach, with the stakeholders involved in all stages of the implementation process. The implementation process model of Grol and Wensing was used to structure and support planning, execution and evaluation of the implementation strategy. The expected barriers and facilitators will be explored and identified in focus group settings using the Theoretical Domains Framework. After that, each team will develop their own action plan with strategies for how to resolve each barrier. The teams will include 5-10 ALS patients with whom they will test their implementation plan and provide care with ALS Home-monitoring and Coaching for approximately 3 months. Afterwards, the implementation and the user experiences will be evaluated with digital surveys based on the evaluation framework of Proctor (e.g., acceptability, adoption, appropriateness). Discussion Using implementation theories, this study will provide inside in factors influencing implementation outcomes and strategies that can be used to overcome barriers. This will enhance our understanding of how to successfully implement e-health innovations in multidisciplinary care in rehabilitation settings. Trial registration Trial NL8542 registered at Netherlands Trial Register (trialregister.nl) on 15th April 2020.

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“…We have used the Involvement Matrix to gain insight into how young people were involved in projects [ 26 ]. Originally, the intention of this tool is to facilitate PPI and the dialogue between patients and project teams about their roles in a project [ 27 ]. In the current study, we asked project teams to fill out the Involvement Matrix after the project ended.…”

Section: Methodsmentioning

confidence: 99%

Patient and public involvement of young people with a chronic condition: lessons learned and practical tips from a large participatory program

et al. 2020

Self Cite

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Plain English summary Background Young people with a chronic condition are increasingly involved in doing research and developing tools and interventions that concern them. Working together with patients is called Patient and Public Involvement (PPI). We know from the literature that PPI with young people with a chronic condition can be challenging. Therefore, it is important that everyone shares their lessons learned from doing PPI. Aim We want to share our lessons learned from a large program, called Care and Future Prospects. This program helps young people with a chronic condition to, for example, go to school or to find a job. It funded numerous projects that could contribute to this. In all projects, project teams collaborated with young people with a chronic condition. What did we do We asked young people with a chronic condition and project teams about their experiences with PPI. Project teams wrote reports, were interviewed, and filled out a tool called the Involvement Matrix. Young people filled out a questionnaire. Findings In the article, we present our lessons learned. Examples are: it is important to involve young people with a chronic condition from the start of a project and everyone involved in a project should continuously discuss their responsibilities. We provide practical tips on how young people with a chronic condition and project teams can do this. A tip for young people is, for example: ‘discuss with the project team what you can and want to do and what you need’. An example of a tip for project teams is: ‘Take time to listen attentively to the ideas of young people’. Abstract Background The Patient and Public Involvement (PPI) of young people with a chronic condition receives increasing attention in policy and practice. This is, however, not without its challenges. Consequently, calls have been made to share lessons learned during PPI practice. Methods We share our lessons learned from a large participatory program, called Care and Future Prospects. This program aims to improve the social position of young people aged 0–25 with a physical or mental chronic condition by funding participatory projects. We have drawn our lessons from 33 of these projects, using four data sources. One data source provided information from the perspective of young people with a chronic condition, i.e. questionnaires. Three data sources contained information from the perspectives of project teams, i.e. project reports, case studies of projects and Involvement Matrices. For most of the projects, we have information from multiple data sources. Results We have combined the findings derived from all four data sources. This resulted in multiple lessons learned about PPI with young people with a chronic condition. Those lessons are divided into six themes, including practicalities to take into account at the start, involvement from the start, roles and responsibilities, support, flexibility and an open mind, and evaluation of process and outcomes. Conclusions The lessons learned have taught us that meaningful PPI requires effort, time and resources from both young people and project teams, from the beginning to the end. It is important to continuously discuss roles and responsibilities, and whether these still meet everyone’s needs and wishes. Our study adds to previous research by providing practical examples of encountered challenges and how to deal with them. Moreover, the practical tips can be a valuable aid by showing young people and project teams what concrete actions can support a successful PPI process.

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Designing a tool to support patient and public involvement in research projects: the Involvement Matrix

Cited by 112 publications

References 38 publications

Identification and Reporting of Patient and Public Partner Authorship on Knowledge Syntheses: Rapid Review

Identification and Reporting of Patient and Public Partner Authorship on Knowledge Syntheses: Rapid Review

Implementation and evaluation of an e-health innovation for personalized care for patients with amyotrophic lateral sclerosis (ALS): protocol for a participatory action research study

Patient and public involvement of young people with a chronic condition: lessons learned and practical tips from a large participatory program

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