Patient and public involvement in research: the need for budgeting PPI staff costs in funding applications.

BACKGROUND: Patient and Public Involvement (PPI) groups are becoming more established as collaborators with academic researchers and institutions to ensure that research is important and relevant to end users, and to identify areas that might have ethical considerations, as well as to advise on solutions. The National Institute for Health and Care Research UK Standards for Public Involvement in Research embody best practice for PPI, including support and learning opportunities that build confidence and skills for members of the public to play an invaluable and mutually productive role in research. However, the pivotal role of research and professional services (management and administrative) staff within academic institutions for sustaining and making this involvement successful is often overlooked. MAIN BODY: It takes significant effort to develop and sustain effective PPI in research. The six UK Standards for Public Involvement highlight the need for consistent, inclusive, well-governed and mutually respectful working relationships to sustain effective PPI contributions in health research. Productivity across a team of lay and academic members requires organisation and experience of implementing these standards by a dedicated PPI team, yet advice on PPI finances is usually focused on costs for patient panel members, and budgets in funding applications rarely consider the wider PPI team behind this involvement. As an exemplar, we reflect on how the Asthma UK Centre for Applied Research (AUKCAR) has developed a dedicated PPI Platform, with guidance for how PPI should be embedded throughout the research lifecycle, and detailed information to support the costing of PPI in funding applications. AUKCAR's work with established researchers, as well as Early Career Researchers and PhD students, is at the heart of a campaign to raise awareness of the importance of PPI in effective research planning. CONCLUSION: Focusing attention on the staff behind best practice involvement in health research may stimulate a much-needed discussion to ensure flourishing PPI capacity, with significant patient and public benefit. With adaptation, the PPI expertise within AUKCAR can be translated more widely.

Patient and Public Involvement (PPI) is important for high-quality research. It makes research more relevant to patients, and makes the results more useful for the health service. To make patient involvement effective, we need skilled staff with experience of involving lay members in research, as well as engaging researchers in PPI activities. There is little guidance about staff time needed to recruit and support lay members and researchers properly. This means that we still do not understand the true cost of including patients and the public in research, and we often under cost this in funding applications. As an example, we reflect on how the Asthma UK Centre for Applied Research (AUKCAR) has organised staff to support for its patient involvement. We give some thoughts on how to cost PPI staff time in funding applications. By focusing attention on the team behind the lay volunteers, we hope to encourage a much-needed discussion about the support involved, and deliver more patient benefits. The AUKCAR experience can be adapted to other research topics and contexts.

IMP2ART: development of a multi-level programme theory integrating the COM-B model and the iPARIHS framework, to enhance implementation of supported self-management of asthma in primary care.

BACKGROUND: Supported asthma self-management, incorporating an asthma action plan and annual clinical review, has been recommended by UK/global guidelines for over three decades. However, implementation remains poor, as only around a third of individuals receive basic asthma care, according to the UKs leading respiratory charity Asthma and Lung UK. A systematic review of implementation studies recommended that a whole systems approach targeting patients, healthcare professional education, and organisations is needed to improve implementation of supported asthma self-management in primary care. The IMPlementing IMProved Asthma self-management as RouTine (IMP2ART) is a national Hybrid-II implementation cluster randomised controlled trial that aims to evaluate such an approach. This paper describes the development of the implementation strategy for IMP2ART with particular focus on the integration of multiple level theories. METHODS: The Medical Research Council design and evaluation of complex interventions framework and the Person-Based Approach to intervention development were used as guidance for stages of strategy development. Specifically, we (i) set up a multidisciplinary team (including practicing and academic clinicians, health psychologists, public health and patient colleagues), (ii) reviewed and integrated evidence and theory, (iii) developed guiding principles, (iv) developed prototype materials, and (v) conducted a pre-pilot study before final refinement. RESULTS: The implementation strategy included resources for patients, team-based and individual healthcare professional education, practice audit and feedback, and an asthma review template, as well as a facilitator role accessible to primary care practices for 12 months. The synthesis of the integrated Promoting Action on Research Implementation in Health Services (iPARIHS) and Capability, Opportunity, Motivation and Behaviour (COM-B) frameworks led to an evolved framework bringing together important implementation and behaviour change elements which will be used as a basis for the study process evaluation. CONCLUSIONS: A description of rigorous implementation strategy development for the IMP2ART study is provided along with newly theorised integration of implementation and behaviour change science which may be of benefit to others targeting implementation in primary care. TRIAL REGISTRATION: ISRCTN15448074. Registered on 2nd December 2019.

Psychological health and wellbeing of primary healthcare workers during COVID-19 pandemic in Malaysia: a longitudinal qualitative study.

BACKGROUND: Primary healthcare workers (PHCWs) are at the frontline of dealing with viral pandemics. They may experience significant psychological stresses, which have hitherto not been examined in depth. We aimed to explore the impact of the COVID-19 pandemic on the psychological health and wellbeing of frontline PHCWs in Malaysia. METHOD: We purposively recruited PHCWs with diverse backgrounds in Klang Valley, Malaysia. Using longitudinal qualitative methods, we conducted two sequential semi-structured telephone interviews, 3 to 4 weeks apart, to capture different stages of the pandemic. Interviews were audio-recorded, transcribed verbatim, and analysed thematically. RESULT: Twenty-one PHCWs participated yielding a total of forty-two interviews. Themes clustered around stressors associated with work, home, and leisure activities, emotional changes, and modifying factors. In the first interviews, COVID-19 had just started in Malaysia. Participants expressed fear about the actual and perceived personal risk of COVID-19 infection. Most were worried about transmitting COVID-19 to their family members. Some felt stigmatized because of this perceived risk of infection. By the second interviews, participants felt safer, but instead focused on the need to keep other people safe. Participants' emotions were influenced by their perceived risk of contracting COVID-19 infection. Internal factors such as religion enabled them to manage their concerns and develop personal coping strategies. Support from family members, colleagues, and employers promoted wellbeing during the pandemic. Training sessions, daily roll calls, and psychological support services were important in maintaining their psychological health and wellbeing. Many participants were hopeful and believed normalcy would return by the end of 2020. CONCLUSION: PHCW's psychological health and wellbeing evolved throughout the early stages of the pandemic and were influenced by their perceived risk of contracting the disease and personal belief structures. Clear updates on the disease and strategies for keeping safe at work and socially are essential to maintaining PHCWs' psychological health and wellbeing.

A Behavioral Health Survey of Primary Care Integration in Rhode Island.

BACKGROUND: Integrating behavioral and primary care practices improves quality of care, but limited data exists regarding the extent or attributes of such integration. We conducted a baseline evaluation of the level and characteristics of integrated practices in Rhode Island. METHODS: The Rhode Island Department of Health 2015 Statewide Health Inventory Behavioral Health Survey was sent to behavioral health clinics and outpatient psychiatry and psychology practices. Survey questions assessed indicators of integration, including colocation, shared electronic medical records (EMRs), and shared communication systems. RESULTS: Only 19%, 9%, and 17% of behavioral health clinics, psychiatrists, and psychologists, respectively reported any integration with primary care practices. Compared to psychology (3.5%) and psychiatry (0.0%) practices, behavioral health clinics reported the highest level of practice colocation (10.4%, P<0.05). Compared to non-colocated practices, colocated behavioral health clinics reported higher levels of integration by other indicators, including shared EMRs (33.0% vs 0.0%, P=0.01). CONCLUSION: This statewide survey demonstrated that limited integration exists between behavioral health and primary care practices in Rhode Island, and that such integration has a range of characteristics and levels. More practice integration is needed to ensure the delivery of high-quality, evidence-based care to the millions of individuals living with cooccurring behavioral and physical health needs.