Patient Involvement Strategies Research Articles

‘A commitment to Equality, Diversity and Inclusion’: a conceptual framework for equality of opportunity in Patient and Public Involvement in research

Many research institutions and funders have recently stated their commitment to actively support and promote ‘Equality, Diversity and Inclusion’ (EDI) in various aspects of health research including Patient and Public Involvement (PPI). However, translating this commitment into specific research projects presents significant challenges that existing approaches, practical guidelines and initiatives have not adequately addressed. In this paper, we explore how the lack of clear justifications for the EDI commitment in existing guidelines inadvertently complicates the work of those involved with PPI and we stress the need for conceptual clarity for any EDI effort to yield meaningful results. Our focus centres on the first principle of the EDI discourse, ‘equality’, particularly in the form of ‘equality of opportunity’ as outlined in current guidance provided by the National Institute of Health Research in the United Kingdom. We examine challenges related to justifying and implementing a general, unspecified commitment to equality of opportunity and explain that this reflects a lack of consensus regarding the moral value of PPI in research – a profound problem that remains unaddressed. We then discuss how the presence of several opposing moral perspectives on PPI, makes determining the most appropriate way of addressing barriers to involvement complex and controversial, raising ethical implications for the work of health researchers, PPI specialists and coordinators. Finally we make suggestions on how future research can enrich the concept of ‘equality of opportunity’ in PPI and improve practice. While our primary focus is on the NIHR, a strong advocate of PPI in research, this analysis will point to normative and ethical considerations that may be relevant to other research institutions and funding organisations aiming to promote equality of opportunity in their public and patient involvement strategies.

Updates on the multidisciplinary management of elderly patients with rectal cancer: a narrative review.

The burden of rectal cancer in the elderly population continues to increase. The aim of this narrative review is to assess evidence updates on the management of elderly patients with rectal cancer. The subject of rectal cancer in patients ≥70 years old was divided into different topics and, based on the research items, the literature review searched relevant studies from MEDLINE (via PubMed), Cochrane Central Register of Controlled Trials, and EMBASE between January 2000 and November 2022. Systematic reviews with or without meta-analyses, narrative reviews, randomized trials, and non-randomized cohort studies were included. For the fit elderly patient with preserved sphincter tone, standard-of-care surgical therapy should be pursued, whereas frail patients with more advanced disease could benefit from local excision as a palliative approach in combination with neoadjuvant chemoradiotherapy or more intensive radiotherapy options. Laparoscopic total mesorectal excision is recommended after carefully evaluating the patient's medical history, performance status, and tumor characteristics. Conversely, local excision can be implemented when balancing frailty, oncological outcomes, functional outcomes, and life expectancy. A watch and wait strategy can be considered in selected frail elderly patients with low-rectal tumors in case of complete clinical response after neoadjuvant chemoradiotherapy, with a stringent surveillance protocol, at least in the first three years. In elderly patients with rectal cancer, the adoption of strategies for patient involvement in healthcare decision-making is essential, as well as the evaluation of the social background and a discussion with the patient about therapeutic modalities.

PP11 Impact Of Qualitative Research In The Spanish Network Of Health Technology Assessment

IntroductionQualitative research is being increasingly integrated in heath technology assessments (HTA) within the Spanish Network of Agencies for Assessing National Health System Technologies and Performance (RedETS). Qualitative research methodological guidelines are given in RedETS HTA guidelines and the Patient Involvement Strategy. A specific methodological guideline to systematically review qualitative studies was published in 2007 and is pending its update. The impact of their implementation is unknown. The aim of this work is to analyze the techniques, impact and reporting of qualitative research (primary and secondary) in HTAs.MethodsA manual search of the HTAs published in the last 5 years in RedETS was conducted to locate assessments that include qualitative research. To ensure a complete identification, RedETS agencies and units were consulted to provide information about the assessments that have used qualitative techniques in their development over the past 5 years. A content analysis of the selected assessments was conducted to analyze the techniques, impact and reporting of qualitative research in HTA.ResultsIn the past five years, focus groups, semi-structured interviews, evidence synthesis of observational studies including qualitative studies have been used and integrated in HTA in RedETS. Most of them have been linked to patient involvement facilitation or the inclusion of patient perspectives in HTA. Qualitative research has been used to analyze patient’s experiences and values, to elicit and select important outcome measures for patients, to research for barriers-facilitators for technology implementation and to inform evidence to decision frameworks.ConclusionsQualitative primary and secondary research is being used in HTA in Spain. It is mainly linked to patient involvement strategies both to elicit patient perspectives directly or to collect patient-based evidence. The impact of qualitative research in HTA is broad and diverse, extending from the scope of the assessments to the drafting of the recommendations.

Patient participation in care safety: Primary Health Care professionals' perception.

to analyze health professionals' perception about the meaning and practice of patient involvement in care safety in Primary Health Care. this is an exploratory, qualitative study, developed with 22 professionals in the Federal District, Brazil. A semi-structured interview was conducted between October and November/2018. Content analysis was carried out according to Bardin. nurses, physicians, dentists, among others, participated. The following categories emerged: Meaning of patient involvement in care safety; Factors intervening in patient involvement in care safety; Strategies for patient involvement in care safety; Qualification for patient involvement in care safety. the meaning of patient involvement for care safety was associated with co-responsibility and patient-centered care. Professionals' practice revealed intervening factors and the use of involvement strategies. A gap was identified in training on patient involvement in care safety.

Evaluation of patient involvement strategies in health technology assessment in Spain: the viewpoint of HTA researchers.

The Spanish Network of Agencies for Assessing National Health System Technologies and Performance (RedETS) defined a patient involvement (PI) framework for health technology assessment (HTA) activities in 2016. The aim of this study is to evaluate the process and impact of those PI initiatives that were implemented in the first year following the publication of this new framework. A survey was sent to those HTA researchers who implemented PI in RedETS projects. Responses were reviewed by two authors. An adapted thematic analysis was performed and the results were later discussed by all authors. Six responses from six agencies/units were analyzed. The objectives of PI initiatives were the following: inclusion of patient perspectives, preferences and values; elicitation of important health outcomes measures; and barriers, facilitators, or suggestions for implementation. Different methods were used for PI: surveys, focus groups, in depth interviews, and participation in an expert panel. Five main themes emerged: (i) challenges with the recruitment process, (ii) needs identified, (iii) impact of PI, (iv) lessons learned, and (v) suggestions for the future. PI initiatives within the RedETS framework were tailored to each HTA project, its specific goals and the individual needs and resources of each HTA agency. The results also pointed out how PI has a relevant impact that has enriched RedETS products providing key information on experiences, values, and preferences of patients, contributions that benefit the HTA and the process of drawing up recommendations. The main challenges were related to recruitment processes and capacity building.

Patient involvement strategies to improve the quality of cancer care and research

The International Journal of Integrated Care (IJIC) is an online, open-access, peer-reviewed scientific journal that publishes original articles in the field of integrated care on a continuous basis.IJIC has an Impact Factor of 5.120 (2020 JCR, received in June 2021)

Mobile Health Technology for Atrial Fibrillation Management Integrating Decision Support, Education, and Patient Involvement: mAF App Trial

BackgroundMobile Health technology for the management of patients with atrial fibrillation is unknown. MethodsThe simple mobile AF (mAF) App was designed to incorporate clinical decision-support tools (CHA2DS2-VASc [Congestive heart failure, Hypertension, Age ≥75 years, Diabetes Mellitus, Prior Stroke or TIA, Vascular disease, Age 65–74 years, Sex category], HAS-BLED [Hypertension, Abnormal renal/liver function, Stroke, Bleeding history or predisposition, Labile INR, Elderly, Drugs/alcohol concomitantly], SAMe-TT2R2 [Sex, Age <60 years, Medical history, Treatment, Tobacco use, Race] scores), educational materials, and patient involvement strategies with self-care protocols and structured follow-up. Patients with atrial fibrillation were randomized into 2 groups (mAF App vs usual care) in a cluster randomized design pilot study. Patients' knowledge, quality of life, drug adherence, and anticoagulation satisfaction were evaluated at baseline, 1 month, and 3 months. Usability, feasibility, and acceptability of the mAF App were assessed at 1 month. ResultsA total of 113 patients were randomized to mAF App intervention (mean age, 67.4 years; 57.5% were male; mean follow-up, 69 days), and 96 patients were randomized to usual care (mean age, 70.9 years; 55.2% were male; mean follow-up, 95 days). More than 90% of patients reported that the mAF App was easy, user-friendly, helpful, and associated with significant improvements in knowledge compared with the usual care arm (P values for trend <.05). Drug adherence and anticoagulant satisfaction were significantly better with the mAF App versus usual care (all P < .05). Quality of life scores were significantly increased in the mAF App arm versus usual care, with anxiety and depression reduced (all P < .05). ConclusionsThe pilot mAFA Trial is the first prospective randomized trial of Mobile Health technology in patients with atrial fibrillation, demonstrating that the mAF App, integrating clinical decision support, education, and patient-involvement strategies, significantly improved knowledge, drug adherence, quality of life, and anticoagulation satisfaction.

Practice variation in the structure of stroke rehabilitation in four rehabilitation centres in the Netherlands.

To describe practice variation in the structure of stroke rehabilitation in 4 specialized multidisciplinary rehabilitation centres in the Netherlands. A multidisciplinary expert group formulated a set of 23 elements concerning the structure of inpatient and outpatient stroke rehabilitation, categorized into 4 domains: admission-related (n = 7), treatment-related (n = 10), client involvement-related (n = 2), and facilities-related (n = 4). In a cross-sectional study in 4 rehabilitation centres data on the presence and content of these elements were abstracted from treatment programmes and protocols. In a structured expert meeting consensus was reached on the presence of practice variation per element. Practice variation was observed in 22 of the 23 structure elements. The element "strategies for patient involvement" appeared similar in all rehabilitation centres, whereas differences were found in the elements regarding admission, exclusion and discharge criteria, patient subgroups, care pathways, team meetings, clinical assessments, maximum time to admission, aftercare and return to work modules, health professionals, treatment facilities, and care-giver involvement. Practice variation was found in a wide range of aspects of the structure of stroke rehabilitation.

Patient involvement in Danish health care.

The purpose of this paper is to investigate different types of patient involvement in Denmark, and to discuss the potential implications of pursuing several strategies for patient involvement simultaneously. The paper presents a preliminary framework for analysis of patient involvement in health care. This framework is used to analyze key governance features of patient involvement in Denmark based on previous research papers and reports describing patient involvement in Danish health care. Patient involvement is important in Denmark at the rhetorical level, and many policies and initiatives have been introduced. All three governance forms (voice, choice and co-production) are used. However, there are important barriers and limitations in translating the rhetoric into practice, and potential synergy and negative synergy effects can be identified when pursuing the strategies at the same time. Because of the chosen research approach, the research results may lack generalizability. Therefore, researchers are encouraged to test the proposed framework further. The paper includes implications for the development of patient involvement in health care. This paper fulfills a need to study different types of patient involvement and to develop a theoretical framework for characterizing and analyzing such involvement strategies.

003 Towards optimal patient involvement in guideline development groups

BackgroundThe involvement of patient representatives in guideline development groups (GDGs) could increase legitimacy and quality of clinical practice guidelines (CPGs), since the experiential knowledge of patients could complement scientific evidence....

Introducing the patient's perspective in hospital health technology assessment (HTA): the views of HTA producers, hospital managers and patients

The recent establishment of health technology assessment (HTA) units in University hospitals in the Province of Quebec (Canada) provides a unique opportunity to foster increased participation of patients in decisions regarding health technologies and interventions at the local level. However, little is known about factors that influence whether the patient's perspective is taken into consideration when such decisions are made. To explore the practices, perceptions and views of the various HTA stakeholders concerning patient involvement in HTA at the local level. Data were collected using semi-structured interviews with 24 HTA producers and hospital managers and two focus groups with a total of 13 patient representatives. Patient representatives generally showed considerable interest in being involved in HTA. Our findings support the hypothesis that the patient perspective contributes to a more accurate and contextualized assessment of health technologies and produces HTA reports that are more useful for decision makers. They also suggest that participation throughout the assessment process could empower patients and improve their knowledge. Barriers to patient involvement in HTA at the local level are also discussed as well as potential strategies to overcome them. This study contributes to knowledge that could guide interventions in favour of patient participation in HTA activities at the local level. Experimenting with different patient involvement strategies and assessing their impact is needed to provide evidence that will inform future interventions of this kind.

Involving patients in HTA activities at local level: a study protocol based on the collaboration between researchers and knowledge users.

BackgroundThe literature recognizes a need for greater patient involvement in health technology assessment (HTA), but few studies have been reported, especially at the local level. Following the decentralisation of HTA in Quebec, Canada, the last few years have seen the creation of HTA units in many Quebec university hospital centres. These units represent a unique opportunity for increased patient involvement in HTA at the local level. Our project will engage patients in an assessment being carried out by a local HTA team to assess alternatives to isolation and restraint for hospitalized or institutionalized adults. Our objectives are to: 1) validate a reference framework for exploring the relevance and applicability of various models of patient involvement in HTA, 2) implement strategies that involve patients (including close relatives and representatives) at different stages of the HTA process, 3) evaluate intervention processes, and 4) explore the impact of these interventions on a) the applicability and acceptability of recommendations arising from the assessment, b) patient satisfaction, and c) the sustainability of this approach in HTA.MethodsFor Objective 1, we will conduct individual interviews with various stakeholders affected by the use of alternatives to isolation and restraint for hospitalized or institutionalized adults. For Objective 2, we will implement three specific strategies for patient involvement in HTA: a) direct participation in the HTA process, b) consultation of patients or their close relatives through data collection, and c) patient involvement in the dissemination of HTA results. For Objectives 3 and 4, we will evaluate the intervention processes and the impact of patient involvement strategies on the recommendations arising from the HTA and the understanding of the ethical and social implications of the HTA.DiscussionThis project is likely to influence future HTA practices because it directly targets knowledge users' need for strategies that increase patient involvement in HTA. By documenting the processes and outcomes of these involvement strategies, the project will contribute to the knowledge base related to patient involvement in HTA.

Narrative approaches to healthcare research

Background:The significance of the patient's story has evolved over the centuries and has varied according to the importance placed on the subjective experience of illness. Patients are no longer regarded as passive recipients of healthcare; they have become active participants, with personal stories to tell about the journeys they have travelled from sickness to health.Contents:Narrative methodologies play a valuable role in participatory health research. Listening to what patients choose to tell, rather than asking pre-determined research questions, involves a shift of power. A narrative approach offers a different way of exploring a patient's world and reflecting on our everyday practices. It respects the individuality of human experience, and calls for an individualized therapeutic response. Narratives can be analysed in different ways, with a focus on what has been told, or on why a story has been constructed in a certain way.Conclusions:Narrative methods are increasingly relevant in the current climate of public and patient involvement strategies. Patients' stories can produce vital evidence about how they perceive their therapeutic and rehabilitation needs. They also illuminate how patients regard our everyday practices, what could be done differently and how we can respond to the issues they raise.

How willing are patients to question healthcare staff on issues related to the quality and safety of their healthcare? An exploratory study

Background:One in 10 patients admitted to hospital will suffer an adverse event as a result of their medical treatment. A reduction in adverse events could happen if patients could be...

Partnerships, Power and the “New” Politics of Community Participation in British Health Care

Multi–sectoral approaches to health improvement in its broadest sense have entailed an emphasis by the British government upon partnership working in and around community involvement in planning processes. New service planning and delivery organizations in the health service—primary care groups and primary care trusts—thus have to ensure that public and patient involvement strategies reflect a coordinated, if not integrated, multi–sectoral approach to such involvement. But how are these enforced partnership arrangements shaping the approach taken by primary care groups and trusts to the issue of public and patient involvement? More particularly, is the traditional dominance of health service managers and the medical profession in decision–making processes under challenge? This article draws on a study of primary care groups and trusts in three districts in order to gauge perceptions and calculations with regard to partnerships for involvement. Results appear to suggest that health service managers and practitioners continue to exercise considerable influence in comparison to that of patients and citizens. But, if the findings are viewed in the broader contexts of government managerialist strategies of surveillance and accountability and the growth of service–user and advocacy organizations, partnerships may offer significant scope for “lay” challenges to managerial and medical power.