The purpose of this case study is to describe how a vulnerable group of patients can be included in research. The activities, challenges, lessons learned, and reflections on the importance of patient involvement in research for 5 years (2016–2021) at the adolescent and young adult (AYA) cancer support facility, Kræftværket, are reported.A patient panel at Kræftværket, the Youth Panel has multiple aims, one of which is the ability to perform patient involvement in research, with the goal of achieving research of high quality. We here describe how Patient and Public involvement (PPI) can be customized to AYAs in a cancer trajectory, who face many challenges, including those in the physical, psychological, and social domains. During 2016–2021, Youth Panel meetings were planned every third month but interrupted during the COVID-19 pandemic. With a flexible structure and a dynamic panel including 10–15 varying AYAs in a cancer trajectory, engagement and involvement have been maintained. Eight research topics were investigated, seven of which were discussed and confirmed to be important by the Youth Panel. Out of eight topics, three were raised by patients, and five by researchers. One was not discussed due to COVID-19. Some of the challenges we have experienced were related to the flexible meeting structure and the differing expectations and priorities as well as the impact of COVID-19. However, we experienced that patient involvement is possible in the field of AYA oncology if a trusting environment is created. A key finding in our case study was, that without a national Danish PPI program and no defined international standard for PPI in AYA cancer research yet, we were able to give patients the possibility to give input to researchers on topics where research is missing.Here, we demonstrate how patient involvement in research has been performed at an AYA cancer facility, Kræftværket, during a 5-year period. We encourage others to perform patient-involving research, even in challenging populations. Ideally this must follow international standards for PPI in AYA cancer research when such exist to improve research with crucial insight from patients. In this paper, we describe patient involvement in research at Kræftværket, a youth support center and social organization for AYAs in a cancer trajectory. The center is located at The University Hospital Rigshospitalet in Copenhagen, Denmark. Youth panel meetings are Kræftværkets’ most central patient involvement activity, and one of its aims is to facilitate high-quality patient-initiated research. AYA cancer patients are a vulnerable group facing huge psycho-social challenges and symptoms that make normal functioning difficult. Therefore, the youth panel is designed to be flexible in its structure, so participants do not have to commit themselves as permanent members. The youth panel meets four times a year, and during the period 2016–2021, it has been involved in eight research topics. Challenges include the flexible meeting structure, different expectations, and priorities as well as the impact of COVID-19. However, patient involvement has been possible because of a trusting environment with strong nurse-led support for the participants. We hope to encourage others to argue for and carry out meaningful patient-involving research to improve tomorrow’s quality of AYA cancer care. In Denmark, approximately 600 AYAs in the age group 15–29 years are diagnosed with cancer each year. In descending order, the most common cancers for AYAs between the ages of 15 and 29 in Denmark are malignant melanoma, testicular cancer, cervical cancer, thyroid cancer, lymphoma, leukaemia, central nervous system cancer, and breast cancer . AnnuallThe supportive initiative for adolescents and young adults in a cancer trajectory is named Kræftværket. The primary objective of Kræftværket is to provide youth-friendly support, including adolescent-friendly facilities, resources, and activities. As Kræftværket provides services to both paediatric (patients aged 15–18 years) and adult departments (patients aged 19–29 years), a network has been created between patients who would otherwise not interact. The initiative is managed by a Youth Coordinator  and five specifically trained nurses: Youth Ambassadors , who havKræftværket allows AYAs in a cancer-trajectory  to connect with peers and enables the active participation and engagement of AYAs throughout the initiative. Both in-Kræftværket and out-of-hospital activities, e.g., dinners, music events, etc., for patients together with the youth coordinator and youth ambassadors, creates new relations and an including acknowledging and safe environment. Other objectives of Kræftværket are to develop multidisciplinary collaboration across adolescent medicine, paediatric, and adult cancer departments; to incorporate knowledge sharing, teaching, and involvement of relevant health professionals ; to coordinate political and administrative activities surrounding AYAs in a cancer trajectory; and to continuously improve quality of care and further research in the field of AYA cancer care .In recent years, Patient and Public Involvement (PPI) has been recommended by funding agencies, especially in the United States of America, Canada, and the United Kingdom –6. The pThe aim of this case study is to describe how a vulnerable group of patients can be successfully included in research in real-life. The activities, challenges, lessons learned, and reflections on the importance of patient involvement in research for 5 years (2016–2021) at an AYA cancer support facility are reported.When Kræftværket was created as a patient-involving cocreation project in 2015, research was initially not defined as a focus point. Fastly, it became evident that the users of Kræftværket raised important issues, of which some could not be spontaneously solved because of a lack of knowledge in certain problem areas. A steering committee of Kræftværket, comprising representatives from different departments treating AYAs with cancer, leaders and the youth coordinator decided to attach a research group to Kræftværket. The research group comprises researchers on haematology, oncology, paediatric oncology, youth and nursing research. This group of researchers should act on input from the patients and aim at patient-involving research. Since 2016, the research group has worked according to this action plan, and patient involvement has been a cornerstone in the performed research activities. Aiming at continuous patient involvement not only in research but in all aspects of the AYA cancer trajectory, it had from the beginning also been decided to have a patient panel at Kræftværket, the youth panel. Here, the activities, challenges, lessons learned, and reflections on the importance of patient involvement in research at Kræftværket are described from the perspective of a patient, three researchers and a youth coordinator.Denmark has no tradition for systematic patient involvement or agreed framework here for, and at the time, where our initiative was ongoing, the hospital did not have a patient council or other patient-involving structures. Many other researchers have demonstrated and discussed how patients and other users can be recruited per application and selected to form a user panel with broad representation across age groups, gender, diagnosis, etc. . In thisA youth panel typically included between 10 and 15 AYA participants representing both patients with haematological and oncological diseases and a variety of malignant diagnoses. Typically, some of the patients attending would be in active antineoplastic therapy, but patients in follow-up (survivors) or palliative care could also attend.Youth panel meetings were scheduled four times a year. Apart from AYAs in a cancer trajectory, and doctors, Youth Ambassadors, and the Youth Coordinator were also invited. Youth panel meetings were announced on the Kræftværkets closed Facebook group. In the announcement, the agenda for the youth panel meeting was shown. All users of Kræftværket were welcome to sign up for the youth panel meeting, but this should be done prior to the activity. Normally 1–3 issues on the agenda were related to research.Meetings were planned at the Kræftværkets facility in the hospital, and snacks and a meal were served to all participants at every meeting. A welcoming and warm atmosphere was created by the youth coordinator, with whom all participants were familiar. A user said about the meetings: ‘I felt seen, heard and understood’ .At the meetings, a voluntary patient representative was given the role of moderator. All meetings started with an introduction round and welcoming, and the aim of the actual youth panel meeting was highlighted by the youth coordinator. At least one researcher was present at each meeting, but one or more researchers could be invited to present ideas or discuss subjects related to AYAs in a cancer trajectory, the researchers were in general not treating physicians, only one researcher (HP) had treatment responsibility for in average less than 5 percent of the patients in the Youth panel. The youth coordinator was responsible for the minutes from the meeting. Subjects in the youth panel meetings were not limited to research issues, and the meetings had a relaxed atmosphere. All kinds of subjects could be brought up, e.g., practical issues, peer-to-peer advice, and ideas for new activities. Often, challenges were discussed peer-to-peer with the opportunity to obtain input from health care professionals. An example could be a discussion between young women on experiences with fertility counselling leading to a question to health care professionals and researchers about guidelines for fertility counselling. In this case, the discussion ended with a wish from the patients to investigate fertility counselling in young, female cancer patients to determine how to improve this service. The topic raised by patients was then transferred into a research question and acted on by the researchers, and primary results from the research project have been published .During the 5-year period, the COVID-19 pandemic made periodic physical meetings impossible. In total 14 meetings were taking place in the 5-year period. In that period, virtual calls were planned and offered for psychological support biweekly; however, these meetings were more formal and had fewer participants and the meetings had very little focus on research but made it possible to discuss urgent research issues.To ensure easily accessible information about Kræftværket, an explanation about the youth panel and an introduction to the youth coordinator and the youth ambassadors a webpage was created . This weMinutes from the youth panel meetings were always available in the closed Facebook group of Kræftværket.Since both the youth panel and the research group were formally attached to Kræftværket see Fig. , dissemiFrom the start of the research groups’ work with patient involvement, there was awareness of the need to evaluate the process. We found that a more in-depth evaluation was necessary. A combination of interviews and questionnaires was not chosen since the existing tool, the Patient Engagement in Research Scale PEIRS-22) [ [22], waDuring the 5-year period with patient involvement in research projects at an AYA support facility, Kræftværket, more challenges were met, the most important of which were:In March 2020, when COVID-19 was declared a global pandemic, patient involvement activities became more difficult. Youth panel meetings did not initially take place, and a new workflow for interaction with patients without physical meetings had to be introduced. Planned activities such as youth panel meetings were rescheduled to virtual meetings with less or no focus on research, and patient-involving specific projects had to use telephone interviews instead of physical meetings, whereas other projects simply had to be postponed until physical meetings were safe and allowed by health authorities. This period was challenging to the AYAs, and we performed a qualitative project to highlight the special problems influencing their life in this period of isolation [The technical issues of performing virtual meetings instead of in-person meetings in this younger patient group were limited, but fewer people wanted to participate when the meetings were virtual, sometimes as few as 2–4 persons.From the beginning, when introducing in-person meetings we choose a flexible youth panel, with each meeting being open to new members of the panel and some only participating one or a few times. The disadvantage of this setup was that information often had to be repeated, since not all had taken part in prior meetings; at the same time, it helped others recall discussions they had already taken part in. The advantage of the flexible youth panel was that the panel and the researchers were continuously challenged by newcomers, and new insights and topics were brought up. At some point, researchers could become frustrated because an initial youth panel had confirmed a research topic initially, but at a later point, a transformed panel could be more critical of the project. Taken together, this fact led to the optimization of many research projects, e.g., more concise inclusion criteria for a specific project.The youth panel is a collaboration between young people living with cancer or being survivors in a follow-up program, health care professionals with a special focus on AYAs in a cancer trajectory (youth coordinator and youth ambassadors) and doctors/researchers. These participants all strive to improve the health and quality of life of young people living with or after cancer. However, the process through which to achieve these goals could be a discussion point in the panel, while researchers often had longer-term academic goals such as grants and publications, patients preferred fast action achieved through, e.g., addressing the press for attention to specific problems. Through bilateral respect and communication in lay-person language, patients and researchers over time got a better understanding of different approaches to the same subject. Especially for researchers it was a learning process to simultaneous be confronted with the patients’ frustrations and extract valuable inputs for a research process.Because adolescents and young adults are in a transition phase, many different activities have to be prioritized , it was difficult to maintain a continuous group of people in the youth panel, which sometimes made it difficult to fulfil the researchers’ expectations but was a prerequisite and seemed to be problem-free for the patients, who dropped in and out of the panel in the 5-year period.During the 5-year period, we tried to gain growing knowledge on research engagement and involvement among AYAs in a cancer trajectory. In parallel with performing research projects, we have investigated the reasons for and impact of being involved in research/cocreation projects , 26. FroThe youth coordinator of Kræftværket played an essential role in the process. The AYAs in a cancer trajectory already knew and had trust in this key person, and mutual respect existed between the AYAs and the coordinator. The engagement of the youth coordinator in the youth panel and in the research has been essential for creating a trusting environment. However, every time a new researcher was presented in the youth panel, this new person had to be reminded about the importance of valuing different perspectives and giving equal opportunity for feedback, and it could take some time before a new researcher had developed reciprocal relationships including these values.To create a trusting environment with good relationships, we found it valuable to have informal welcome sessions where everyone could catch up, socialize and give support to each other. When the meetings were ongoing, it was important to give many opportunities to the youth panel participants to share their experiences, insights and meanings. It was observed that participants who knew each other better had a higher likelihood of speaking up, but by creating an atmosphere of trust, which was facilitated both by the youth coordinator and more experienced members of the panel, the voice of all participants was heard.When we started the research involving process, none of the AYAs in a cancer trajectory involved had experience with being involved in research, but some of the volunteers who joined the process were researchers themselves or had educations within health care, giving them different insights than other participants. As time evolved, the youth panel became a mixture of experienced patients who knew about research involvement and newcomers. In this group, the youth coordinator, and the experienced participants, both on a peer-to-peer level and in the group, supported new participants and shared their knowledge and experiences with involvement, leading to a continuous back-up from patients to the initiative.In Denmark, there is no formalized education of patients who take part in research, as is known from, e.g., the United Kingdom . All parParticipants in the youth panel had different challenges in participating. Geographic location and transportation could, for some, be an issue to manage scheduled meetings; for others, work or study obligations could stand in the way for participation, which is why meetings were always planned in the late afternoon followed by dinner to give as many as possible the opportunity to participate. It could have been hypothesized that virtual meetings would have had higher participation rates due to the more flexible setup allowing meeting participation from home; however, it was our experience that AYAs in a cancer trajectory suffered from ‘virtual meeting fatigue’ during the pandemic and longed for physical meetings, leading to less participation in virtual meetings. This dilemma has been described by us and others under the theme of ‘social isolation’ . Even thThe flexibility in the composition of the youth panel might seem challenging with respect to diverse representation, but this was overcome by a very open structure where all interested patients were invited to participate, and we have in more exact projects shown how a diversity of participants choose to take part in patient-involving activities . In thisPatients and researchers participating in the youth panel shared a common goal: improving the lives of AYAs in a cancer trajectory. Researchers and patients could, however, have different views on how to achieve this goal. While researchers are often driven by slow funding processes based on grant applications, followed by long research processes leading to a conclusion that can then, if meaningful, be implemented, the patients in some matters demand fast action. Unfortunately, as for education in research involvement, Denmark has no support program for system-level advocacy policy as in some other countries . In our As the participants in the youth panel had different experiences and background imbalances could occur between participants, it was observed that despite these differences, participants were acting very respectfully towards each other and valuing the insight of all at an equal level. Participants showed great patience with each other when, e.g., difficult research projects had to be repeatedly explained to secure understanding among all. Although some AYAs were challenged by cognitive impairment, the atmosphere at Kræftværket facilitated the inclusion of all individual viewpoints. We believe that the Youth coordinator played an important role, as facilitator of a safe atmosphere and stable relationships.During the 5-year period where research engagement and involvement were performed in the supportive facility Kræftværket, different reflections on the importance of engagement arose. Here, we share some of the important themes:Participants in the youth panel felt that their participation gave them a chance to be heard, and they were also keen on that their experiences might help others. It seemed as if the participation was empowering the patients. The participants experienced that their engagement in research, including the formation of new relationships with others, helping others, and having a voice, made sense. The meaningfulness of helping others is described based on our setup  but has Others have described what happens, when people with lived experience of being AYA and having cancer get the chance to share experiences grounded in personal experience, this offers researchers new insights into issues and improves their understanding of health needs , 32. FurWhen researchers and patients are brought together and work together, it can help researchers to identify barriers for AYAs in a cancer trajectory to join research projects. Many good discussions emerged on the accessibility of information and the encouragement from patients to use lay-person language or visuals for better understanding. It was also very valuable with the researchers’ understanding of the AYAs’ life condition, making them respect financial and time limitations as well as limited resources for participation .Due to the flexible setup of our patient-involving initiative, we have experienced both fast success and more complex research processes. This 5-year period has led to new insights into the lives of AYAs in a cancer trajectory, insights that have helped researchers to perform research within the field with more focus on problems that matter to the individuals here and now but also qualify more complex projects to ensure enrolment in important studies in the future. At present, this patient-involving initiative is at a crossroads, where it must be decided if more formalized involvement is needed, as described by researchers in primarily English-speaking countries . In collDuring the 5-year period 2016–2021, several youth panel meetings in our AYA cancer support facility have taken place. At these meetings, research involvement has always been an important issue, and throughout the period, a variety of AYAs have taken part in ensuring diversity in the insights shared on different topics. The setup we used has given patients the possibility to give input to researchers on topics that need more attention and where research is missing. Reporting this real-life experience of PPI for AYAs in a cancer trajectory shows how research originating from Kræftværket and co-work between researchers and patients has, among others, led to the implementation of a national app for AYAs in a cancer trajectory aiming at improving quality of life , the des


Ecological systems are quintessentially complex systems. Understanding and being able to predict phenomena typical of complex systems is, therefore, critical to progress in ecology and conservation amidst escalating global environmental change. However, myriad definitions of complexity and excessive reliance on conventional scientific approaches hamper conceptual advances and synthesis. Ecological complexity may be better understood by following the solid theoretical basis of complex system science (CSS). We review features of ecological systems described within CSS and conduct bibliometric and text mining analyses to characterize articles that refer to ecological complexity. Our analyses demonstrate that the study of complexity in ecology is a highly heterogeneous, global endeavor that is only weakly related to CSS. Current research trends are typically organized around basic theory, scaling, and macroecology. We leverage our review and the generalities identified in our analyses to suggest a more coherent and cohesive way forward in the study of complexity in ecology. Progress in ecology and conservation requires weaving the study of ecological complexity with complex system science. Understanding nature’s complexity is at the core of science , formal research into complex systems began only toward the 19th century. The scientific revolution of the 16th to 17th centuries revealed certain fundamental laws of nature, but the concept that nature can be perfectly predicted following such laws soon began to falter, particularly in micro- and cosmo-physics. For instance, in 1871, James Clerk Maxwell began to explore the limitations of the second law of thermodynamics, and, in 1890, Henri Poincaré identified strong dependence on initial conditions when predicting the motion of celestial bodies using the laws of gravitation, paving the way for chaos theory  in New Mexico, United States  that “the nations and people who master the new sciences of complexity will become the economic, cultural, and political superpowers of the next century”  . In this view, our inference on complex systems can never be perfect because studying a system requires creating boundaries, which is at least partially an arbitrary process for complex systems, and might exclude certain aspects of the system itself and of the environment hosting that system. Note that generalized complexity does not argue against reductionism; instead, it recognizes some of its limitations.Our analyses and approach align with the view embraced by the restricted complexity perspective, which we consider appropriate given the strong quantitative focus of modern ecology. A balance between conceptual advances and urgent action, as well as between restricted and generalized complexity perspectives, will be necessary to face the global environmental crisis . We also predict that articles that explicitly refer to ecological complexity should be more similar among themselves than the control articles, because of ecology’s vast scope. For the same reason, we predict that patterns in how ecological complexity is conceptualized should differ across subfields of ecology, e.g., with certain features being more likely to be discussed together, and/or with some subfields citing different subsets of the literature. Support for these predictions would suggest that authors who refer to ecological complexity do so while relating to a set of shared ideas, and therefore that, at least theoretically, there is potential to organize the study of ecological complexity around the principles we identified in reviewing relevant literature in CSS .We found from the literature that scientists in CSS identified a core set of concepts that characterize complex systems. Common narratives include the idea that complexity is typical of systems composed of multiple, diverse parts and structured across different organizational levels .n = 266) and European (n = 185) institutions contributing more articles. Considering the articles mentioning “ecological complexity” in all fields , we found a steady increase in research effort starting from the late 1990s, exceeding 2000 articles per year as of the end of 2021  to test whether the 23 features we selected through our critical review  are releF1,344 = 86.6, P < 0.0001; F1,344 = 68.53, P < 0.0001; F1,344 = 10.92, P = 0.001; Having assessed the reliability of the 23 features we identified in our critical review, we compared complexity and control articles with respect to their reference to these features. Complexity articles included a significantly (α = 0.05) higher number of features than expected from a random sample of control articles from the ecological literature  and werez = 27.67, P < 0.0001). Conversely, network homophily  was not significant , indicating overall that control and complexity articles tended to be interconnected with each other. Some of the most important features for the extracted network  were not typically common to the complexity articles  only if ecologists will conceptualize ecological “complexity” with more clarity and depth. We propose two simple principles that will help to this end. First, it is always desirable to specify what exactly one means when referring to complexity. While working on our critical review, we noticed that definitions of ecological complexity are extremely rare in the literature, with “complexity” being sometimes used as a buzzword , specifyOne of the most important lessons learned from the development of CSS is that, with a proper focus, we can estimate and even predict how global environmental change will affect many types of complex systems . For instance, we tried searching for reviews summarizing ideas from complexity science in ecology with little success [but see . On the opposite end, incorporating specific terms typically associated with ecological complexity either matched a limited number of articles  or captured several articles not relevant to the question posed . We found a balance between specificity and quantity by searching for general terms but restricting the search to the title (TI) and keywords (AK). The final query was <TI = “ecolog* complex*” OR AK = “ecolog* complex*”>, which returned 188 results . In an exploratory scoping phase, we trialed different search terms by running searches and considering the relevance of the first references. We found that using overly broad terms  yielded a large number of articles  and the effective number of features of first order [i.e., exponential of the Shannon entropy calculated using the relative frequency of features used in each paper; , as calculated using the package “vegan” v.2.5.7  directed network to link complexity articles with the features retrieved from our review . In thisg(y) relating to network configuration, and to model parameters θ associated with g(y). The normalization term k(θ) ensures that probabilities sum to 1. Note that g(y) can be interpreted as covariates in a model that predicts edge occurrence, and that, here, it represents network homophily, i.e., the degree to which nodes are connected based on similarity of their attributes. For this analysis, we constructed a bipartite incidence network, starting from an incidence matrix that included both complexity and control articles. We projected the network to visualize the connections among articles through the features used. The projected network was introduced as a response variable in an ERGM fitted using the package “ergm” v.4.1.2 (R notation)ERGMs assume that the structure of a graph can be explained by a vector of network statistics where “Group” is a categorical variable discriminating complexity and control articles, nodeMatch tests network homophily in terms of article type, and nodeFactor tests the overall probability of nodes forming a link based on their article type.We extracted the reference list from all complexity articles and used it to build a co-citation network, seeking to identify broad trends within the study of ecological complexity. Co-citation networks describe the number of times a reference was cited alongside others, and how often these were co-occurring in the reference lists. Analysis of co-citation networks has been proposed as a tool to enhance transdisciplinary research because it allows identifying key articles that act as bridges between (sub)disciplines, as well as groups of authors focusing on similar research topics (


This is a peer review submitted for the paper "Forecasting the COVID-19 Pandemic in Saudi Arabia Using a Modified Singular Spectrum Analysis Approach: Model Development and Data Analysis".Dear Author,Thank you for the opportunity to review your paper .I believe your manuscript would benefit from an editorial review prior to resubmission. This should include several elements: semantic and syntax review, native speaker edits, and formatting. Some of the words are illegible: modified presents as “modi ed”, different reads “di erent”, and many more. There are many words that appear incomplete or fragmented, which generally renders the manuscript illegible. This may have been due to a formatting bug during submission.At this point, the paper should be reworked and then resubmitted so that an appropriate content review can take place.Thank you and best.Dear Author,Thank you for addressing the formatting issue in your manuscript. However, I believe your manuscript would still benefit from an editorial review with respect to language prior to resubmission. This should include several elements: semantic review, syntax review, and native speaker edits (words such as “glop”). Also, I suggest removing references from the Abstract and adding them to the Introduction section of your paper.Otherwise, I believe your paper will add an interesting viewpoint from a statistical perspective to COVID-19 modeling.Thank you and best.


The social and economic impacts that have occurred during the COVID-19 pandemic can disproportionally affect those already experiencing poverty or at risk of poverty. Therefore, this study sought to explore the relationship between well-being and social determinants of health among Australian adults during the pandemic.Semi-structured interviews were undertaken with 20 participants, aged 21–65 years, from various socioeconomic areas.Three main themes emerged from the analysis of the data: food security; housing outcomes; and psychological and emotional impact. Participants in low socioeconomic areas struggled with food security, having to access food banks, which was precipitated by employment loss during the pandemic. Some female participants experienced worsening inequalities and lack of financial and housing stability, affecting their overall well-being.This study identified that there was a clear social divide between adults living in low socioeconomic areas compared with those living in high socioeconomic areas, with participants in low socioeconomic areas faring worse in terms of exacerbated social determinants of health and consequent impacts on well-being. The emergence of the infectious disease SARS-CoV-2 in 2019 triggered a global pandemic that has had profound impacts on individuals and communities across the world. In response, public health measures were globally implemented to prevent widespread transmission of the SARS-CoV-2 virus , Index of Relative Socio-economic Advantage and Disadvantage (IRSAD)  at a mutually agreed time and date between March and August 2021. All interviews were conducted by a female PhD candidate (HG) who is an experienced public health professional and had previous experience in qualitative interviewing. Prior to commencing the interviews, study details including the study outline and aims that had been emailed to the participants during recruitment were discussed, and participants were assured that the interview was voluntary and that they could withdraw their consent at any time. All participants provided signed informed consent prior to the commencement of the interview; this included consent for audio-recording of the interview. Each one-on-one semi-structured interview was digitally audio-recorded, with participants assigned a unique pseudonym following the interview to ensure anonymity. The semi-structured interviews ranged from 30 to 60 minutes. Participants were provided with a $50 shopping gift card for their time. A total of 20 participants were interviewed, with data saturation, the point at which no new information is yielded  were recruited from various socioeconomic areas in all states and territories throughout Australia. Participants ranged in age from 21 years to 65 years Table . Figure For most participants who resided in low socioeconomic areas, accessing food during the COVID-19 pandemic was described as stressful and challenging, especially when compared to those who resided in high socioeconomic areas. Being able to access food was often reported as difficult with limited financial capacity, frequently precipitated through loss of employment or reduced working hours as part of casual employment. Participants noted this struggle by stating “especially the nature of the work—I mean, casual role—it was 2 days and 5 hours each, but it wasn't enough to sustain myself” (Mandeepa). These financial limitations meant that most participants living in a low socioeconomic area within Australia experienced food-related concerns and food insecurity. One participant stated “Then, with groceries, I’m budgeting it every week. I’m just supposed to be buying less than $50” (Kailani). Participants who experienced food insecurity during the pandemic expressed feelings of helplessness and substantial stress, often having to ration food or skip meals as a coping strategy, with Karlee explaining her challenges: “I would say financially, I already mentioned that, but that was a challenge, and then I think not having money to get food—I would try to eat one meal a day” (Karlee). Other participants in the low socioeconomic areas described having to borrow money from friends or family to purchase food: “Mostly it’s financially, because I ran out of my savings, and I contacted my mum and my sister. My sister sent me extra money to help buy food” (Kailani). While most participants in low socioeconomic areas reflected on increased hardship in relation to food access, one participant who lived in a low socioeconomic area noted that the pandemic changed their approach to managing meals for the better: “We've changed some of our purchasing habits. Even just that short experience of standard work from home lockdown has changed a lot of—we don’t buy as many meals out anymore. For lunches, there's a lot more packed stuff that we make or leftovers from meals” (Joshua).The use of food banks and other non-governmental organisations to access a non-perishable food supply was “a service availed quite frequently” during the pandemic, most prominently among those participants from low socioeconomic areas. Such safety nets ensured a consistent food supply for those most in need, with one participant saying, “every week there were cartons of non-perishables and some fresh produce that were actually delivered to me, to be shared with my partner, which was really helpful” (Mandeepa). Another participant described that they were experiencing financial difficulties and were unable to afford food; she explained: “For me, I just wanted money for food I thought, so that's why I'd just go to the food bank” (Haimi) and was pleased that this service was available. Being able to seek the assistance of the food banks alleviated some of the food worries and insecurity experienced by participants, with one participant appreciative that they could: “I go to the free food places, just to top up my cupboards” (Dominic).Cultural and religious groups also coordinated the delivery of foods to those within their communities that they knew were food-insecure, dropping the food in boxes at their doorstep: “They [Filipino groups] sometimes give a freshly caught fish, rice, bread, pasta sauce, corned beef, canned goods and everything” (Kailani). Kailani voiced that the food delivered by the cultural groups saved them at times: “If we don’t have anything to put on the table, we’ll just grab the corn beef.” Other participants discussed a sense of community when it came to food relief and support, saying, “The community came together. They were doing shopping for elderly and vulnerable people in my building, and they would be ringing me or cooking for me, those sorts of things” (Manaia). Emergency food relief came in all forms, including grocery gift cards, free meals and non-perishable food supplies; these were most often supplied by non-governmental organisations and religious groups.However, reliance on food banks for access to a healthy food supply was relatively scarce among our sample, with most only being able to provide non-perishable items, meaning a lot of the food was of poor dietary quality. Participants described this as “so depressing”, with one communicating that “Just looking at that made me really sad. But yeah, that was a challenge” (Haimi); however, they were grateful for the support, as without it they were unsure of how they would manage.In contrast to participants living in low socioeconomic areas, participants in our sample within higher socioeconomic areas expressed dissimilar food concerns and were largely distressed by the inconvenience of their usual supplies not being available. To remedy this, many decided to support local hospitality businesses and ate “lots of take out. Lots of opulent food. Like decadent food.” (Sergio). While others in high socioeconomic areas had no concerns with food supply, one participant said, “Getting food was not an issue, no, no not really at all. We're quite lucky in that we have a—we're financially, maybe not rich, but we're not that precarious, and we live right next door to a supermarket, so even during lockdown, we'd make it a regular part of our routine to walk the dogs down and buy our groceries. Yeah, food was not an issue” (Trey). Another had a similar experience, saying, “We could get everything that we needed. There was no shortage there where we lived. In fact, it's amazing to think that Woolworths or Coles can get toilet paper at the present time” (Aaron). The majority of those within high socioeconomic areas were able to afford to stockpile food supplies, with one participant communicating, “So we were always stocked up with our vegetables and things like that. We did go out and buy heaps of stuff, although the pasta—limiting to pasta and things like that, which with only the three of us, we were doing okay, but my sister's got four kids, so they were struggling a little bit with the limits of what they could buy” (Alicia).In comparison, those from lower socioeconomic areas did not have the financial ability to stockpile food: “We didn't stockpile, no” (Mandeepa), and another participant had a similar experience stating, “everyone was stocking up on toilet paper and food and everything, and we didn't have much in our pantry” (Haimi). However, for those who lived outside of urban areas and in agriculture-rich regions, fruit and vegetable markets continued to operate, meaning there was an abundant supply of fresh produce. One participant explained, “I mean the supermarkets ran out of the strangest things, but yeah, I mean, one of the benefits of living out of town is you tend to have a lot of dry stores, so that was fine, and since fresh vegetables—I mean we’ve got a lot of agriculture around us, so you get vegetable stalls and they continued to operate and never ran out” (Clara).Hand in hand with the burden of food security, many participants in our sample from low socioeconomic areas expressed emotional distress in relation to securing and maintaining adequate housing.Many participants from low socioeconomic areas experienced feelings of helplessness and loss of control due to their insecure housing tenure. Those who described themselves as being precariously housed were almost exclusively females who lived in low socioeconomic areas. One participant talked about being verbally abused by her landlord and living in fear: “I was in a shared house where my landlord was very abusive verbally, and just it was terrible. At the time I didn't know about my rights, so I was constantly scared that I would—even though that couldn't happen, and I read about that in the news as well, but I was scared that I'd be kicked out of the house. So I wouldn't say anything and I was just in this house where there—you know, it was just a difficult situation. It was quite abusive and because of COVID, I couldn't really go out much, so I was just stuck in that space” (Haimi). Additionally, the landlord continually threatened to increase the rent, but without any employment, the participant felt she had to continue living in this threatening environment.While prior to the pandemic there was a strain on housing within Australia, this was precipitated during the pandemic. In our sample, participants discussed the challenges with one lease ending and trying to find another available private rental or share house, describing it as very uprooting and increasing their anxiety levels saying, “From there, the lease ran out, which was when I moved to the house-sitting place, there was a period of time that was not covered between them, so it was about 3 weeks that I had to find a place to live. It was—the level of anxiety!” (Mandeepa). One participant described having to move “about four times” during the pandemic due to insecure housing. Conversely, a participant who resided in her own home before the pandemic was able to lease her house out and move in with her mother when she lost her employment during the first wave of the pandemic: “So in the end what I had to do was move in with my mum and rent out my house. Just so that—meet the mortgage” (Clara). Kailani spoke about moving to a rural town to commence a new job and the difficulty she experienced in finding housing. She did not have enough money to secure a short-term rental through Airbnb, and she ended up having to find housing in the next town. This made further challenges for Kailani in terms of transport to work, as she didn’t have a car: “I found a place, but then I always take the bus every day for 6 months, I think, I was taking the bus. Where the bus ride, in the morning and the afternoon, only goes once. So, if I’m going to miss it, I won’t be able to go back home or go to work. Then in the afternoon, I’m waiting for 2 hours for the bus so that I’ll go back—when I go back home” (Kailani). Furthermore, she also lived in fear in the shared house because she had to share with four males, which made her very uncomfortable and lonely, never having had to share with males previously. “Losing a sense of control” described the housing situation of most participants in our sample living in low socioeconomic areas.The ability to have stable and affordable housing was an experience that most participants who lived in high socioeconomic areas were fortunate enough to achieve. This was often associated with either having secure employment or owning their own home. Interestingly, housing stability was more evident among males in high socioeconomic areas. Despite Trey losing income during the pandemic, he talked about being lucky to have secure housing: “I have secure housing. My partner owns this house, which was a significant stress off our shoulders” (Trey). Similarly, another participant, Nick was able to gain secondary employment, enabling him to keep up with his mortgage payments: “I was able to maintain my mortgage payments on the house, so, no, it had no impact at all, the housing” (Nick). Having secure full-time employment and financial stability also assisted in housing security, with one participant who had recently moved out of her family home into a rental property explaining, “I’m being good to pay rent, I can buy things I wanted to buy, so I think it’s okay, and I’ve got a full-time job as well, so yeah, it’s okay” (Xiuying). Residing in a high socioeconomic area and living in a rental property, Sergio entertained the idea of asking for a rent reduction, but felt it would not be in his favour, saying, “So the landlord could turn around and go no and actually move out because it sounds like you might be a financial liability to me. So we didn’t ask for rent reduction. We still managed to pay rent, and we were never in a situation of housing precarity. So that was also fortunate” (Sergio). For some participants who had paid off their mortgage, housing was never an issue. One participant explained that “Not long ago I managed to finalise my mortgage, so yes, I’m very lucky with that” (Marcel), while another stated, “I’d been very fortunate, yeah, in that sense I’m a carer for my 92-year-old mother. So I don’t live in the same house but I live on the same property, which we own” (Parrie). Similarly, for participants, such as Aaron, who were self-funded retirees, housing stability was never a challenge, as he was fortunate enough to remain in his own home.Although the majority of low-income participants were concerned about their housing stability, some were able to capitalise on a range of opportunities to secure their housing. One participant felt lucky to have a considerate landlord who assisted her substantially, meaning she did not have a pay rent for a period of time: “So instead of paying rent, I was able to help him with a couple of his other units because he had people move out. So I helped get them into condition for sale. So for doing that he gave me 4 months' rent free”(Manaia). Although Jayda lost employment during the pandemic, she was still about to negotiate paying her mortgage, meaning she had housing stability: “I’m buying my home so I was—I’m fine [inaudible]. Fortunately, I have my own home. So yeah, just paying my mortgage” (Jayda). Despite residing in a low socioeconomic area, participants who had existing social housing provisions in place were able to maintain their housing security. This was the case for Nyah who explained, “I mean because of the disability, I’m lucky to have housing commission housing, so there was not change for me” (Nyah).The direct and indirect impacts on participants' psychological and emotional well-being during the COVID-19 pandemic varied substantially among those who lived in low socioeconomic areas compared to high socioeconomic areas. Participants in all socioeconomic areas were psychologically or emotionally impacted during the pandemic, however, this impact was often experienced more by those living in low socioeconomic areas.The many challenges faced by participants who resided within low socioeconomic areas during the pandemic were related not only to the uncertainty of the pandemic, but also dealing with social determinants of health that were exacerbated during the COVID-19 pandemic. Challenges such as loss of employment, lack of available finances, difficulties in housing stability, and issues with food security only worsened the situation for many and directly affected their well-being. One participant voiced, “My mental health suffered. I didn't think—I had never experienced depression before, not that I noticed anyway, but I went into a really, really dark place when I didn't know how I was going to pay bills and those sorts of things. Before I let people know my situation, things just got really dark and it was very easy to isolate so that people didn't know” (Manaia). This experience was after she had lost her employment, as well as recently losing her partner in an unexpected death. Manaia expressed a deep sense of loss and fear of losing the private rental she had shared with her partner that had memories for her. Additionally, being a New Zealand citizen, Manaia was ineligible for Australian Government financial assistance, which meant that options to address her precarious economic situation were limited.Well-being and quality of life for most participants in our sample were referred to in terms of their mental status and to a lesser degree about exercise and healthy eating. One international student explained, “I think my quality of life was not the best. It was quite a mess, very stressful time. But I think over just amplified that by [a lot], so I think it was really tricky. There were a lot of things I didn't know and I think that just made it more stressful with COVID as well; not eating well, no money, no job, so I never really felt too good, so yeah, I had multiple deficiencies. I wasn't feeling good and I think that made it worse as well” (Haimi). Similarly, Kailani’s experience during the pandemic was worsened by her existing vulnerability and lack of financial and housing stability, affecting her quality of life and well-being substantially. Kailani shared, “So, a lot of anxieties have been the time—a lot of crying, too, during the night. It’s just my boyfriend who know about it. But I felt like I’m having—I don’t know, it’s like a lot of struggles. Inside I’m struggling. Waking up in the morning, I just feel like I just want to cry. I’m always thinking about the financial aspect, too. So, a lot of things are happening” (Kailani).Indeed, for participants who already experienced mental health issues, the pandemic took a particular toll on their ability to manage. One participant expressed, “I would just curl up in bed and not get out of bed and just watch TV. I didn't really have a sense of day or night. I'd sleep when I was tired and be awake when I wasn't, so that didn't really help my mental health. It comforted me through, but it didn't help me improve and get beyond mental health issues” (Reuben). Reuben also stated that he felt “like a zombie”, with a very limited ability to function. Others residing in low socioeconomic areas also described a lack of ability to cope generally, saying, “Inside I’m struggling” to express the impact of COVID-19 on mental health and well-being.While most participants described feeling negative effects on their well-being and quality of life during the pandemic, participants who resided within the highest socioeconomic areas of Australia discussed feeling less affected. Participants who expressed these sentiments had no changes in employment, were financially stable and thrived during the pandemic. A female participant stated, “Like, if anything, everyone was saying 2020 was such a shit year, but for us it was great. I was pregnant, so I loved working from home. I was probably really healthy, because I wasn't eating out or we weren't spending money and it was—I was actually sleeping—getting a lot of sleep and all that important stuff. Then obviously we had our baby, so for us 2020 was a wonderful year” (Alicia). Another male participant, Marcel, expressed a similar experience in that he felt the benefits of being about to work from home and the ability to continue his exercise regime, which meant his quality of life was not affected and he enjoyed the experience of lockdowns, saying, “I think overall I've coped very well with the situation. I don’t think there's been any real challenges to me personally. […] I did maintain an exercise regime through much of the working—the lockdown period. We were doing a lot of walking and stuff, so physical fitness was good” (Marcel).This study sought to investigate the experiences of Australian adults concerning the impacts of the COVID-19 pandemic on the social determinants of health, while exploring whether this impacted their well-being. This study identified themes that were of relevance for participants living in low socioeconomic areas, including food-related concerns, precarious housing situations and the impacts that these had on their psychological and emotional well-being. Furthermore, this study recognised that there was a clear divide between the experiences of those living in low socioeconomic areas compared with adults living in high socioeconomic areas, with participants in low socioeconomic areas fairing worse in terms of exacerbated social determinants of health and consequent impacts on well-being. This was noticeably apparent when it came to food supply and housing stability, which are critical social determinants of health. Interconnected as basic human needs, food and housing are the prerequisites for health and well-being (Kirkpatrick and Tarasuk Food insecurity, defined as the inability to acquire adequate food supply (McKay et al. Social determinants of health do not exist independently from one another, as there are an abundance of factors involved, and the inequalities between socioeconomic groups arise in response to a range of unequal opportunities, unequal conditions and unequal resources Lundberg . That isMany participants experienced loss of employment and loss of income during the pandemic that made them economically vulnerable and ultimately food-insecure. It is important to note that participants in this study that expressed food-related concerns were predominately female and from migrant communities. This is consistent with the global literature that demonstrates that women are more likely to report food insecurity, although there is limited evidence of the reasons for the gender difference (Carter et al. The supply and demand for housing during the pandemic has uncovered the fundamental weaknesses within the Australian housing system (Buckle et al. This study has highlighted that housing instability was mostly the experience of women, rather than men. Australia’s neoliberal preference for a private rental market has led to a lack of affordable housing options and shrinking social housing provision, leaving many women homeless (Blunden and Flanagan The housing- and food-related stresses experienced by participants in this study has influenced their overall well-being, with many discussing the negative effect they had on their mental health, creating or worsening anxiety and depression. This is consistent with the findings of quantitative studies demonstrating that as food insecurity worsens, well-being deteriorates, and when food insecurity is apparent it is associated with depression, stress, and anxiety (Seivwright et al. It is evident from this research that there exists a socioeconomic status variation on the effects on Australians’ well-being during the pandemic based on their existing or amplified experiences of the social determinants of health. Recommendations for public health in addressing the social determinants of health include lobbying governments to incorporate the social determinants of health in all policies, implementing strategies to address food security, and implementing public health interventions to address housing affordability.A strength of this study is that the data were collected via purposively selected participants that allowed for a diverse sample from various socioeconomic areas and geographical locations. Using qualitative methods allowed participants lived experiences to be highlighted, which was particularly important given that this is one of the few studies that have explored participants lived experiences of the social determinants of health during the COVID-19 pandemic. While every attempt was made to conduct all interviews through videoconference, three interviews had to be conducted over the phone, which meant body language and eye contact were not visible and may have impacted on the quality and interpretation of the data (Irvine et al. This study highlights the social and economic divide of the COVID-19 pandemic experience and impacts. The pandemic has amplified existing social determinants of health experienced by those within low socioeconomic areas, particularly those who are female and from migrant communities, demonstrating that social and health inequalities are shaped by the conditions in which people are born, live and work. Overall, the well-being of participants from low socioeconomic areas decreased in response to their experiences and challenges with food insecurity and housing instability, highlighting the need for housing affordability strategies and funding of emergency food relief initiatives. Food access, insecurity and availability for local communities, particularly for those in areas with high socioeconomic disadvantage, can be improved to address some of the barriers associated with food security through providing café/supermarket meal vouchers, access to community gardens and school food programmes. Housing affordability projects require programme expansion and capacity in terms of availability, including an increase in supply of social and public housing. Additionally, there needs to be an increase in rental assistance provided to people within lower socioeconomic areas, especially those in the private rental market, to ensure they have access to affordable housing.


People with long-term conditions frequently transition between care settings that require information about a patient’s medicines to be transferred or translated between systems. This process is currently error prone and associated with unintentional changes to medications and miscommunication, which can lead to serious patient consequences. One study estimated that approximately 250,000 serious medication errors occur in England when a patient transitions from hospital to home. Digital tools can equip health care professionals with the right information at the right time and place to support practice.This study aimed to answer the following questions: what systems are being used to transfer information across interfaces of care within a region of England? and what are the challenges and potential opportunities for more effective cross-sector working to support medicines optimization?A team of researchers at Newcastle University conducted a qualitative study by performing in-depth semistructured interviews with 23 key stakeholders in medicines optimization and IT between January and March 2022. The interviews lasted for approximately 1 hour. The interviews and field notes were transcribed and analyzed using the framework approach. The themes were discussed, refined, and applied systematically to the data set. Member checking was also performed.This study revealed themes and subthemes pertaining to 3 key areas: transfer of care issues, challenges of digital tools, and future hopes and opportunities. We identified a major complexity in terms of the number of different medicine management systems used throughout the region. There were also important challenges owing to incomplete patient records. We also highlighted the barriers related to using multiple systems and their subsequent impact on user workflow, a lack of interoperability between systems, gaps in the availability of digital data, and poor IT and change management. Finally, participants described their hopes and opportunities for the future provision of medicines optimization services, and there was a clear need for a patient-centered consolidated integrated health record for use by all health and care professionals across different sectors, bridging those working in primary, secondary, and social care.The effectiveness and utility of shared records depend on the data within; therefore, health care and digital leaders must support and strongly encourage the adoption of established and approved digital information standards. Specific priorities regarding understanding of the vision for pharmacy services and supporting this with appropriate funding arrangements and strategic planning of the workforce were also described. In addition, the following were identified as key enablers to harness the benefits of digital tools to support future medicines optimization: development of minimal system requirements; enhanced IT system management to reduce unnecessary repetition; and importantly, meaningful and continued collaboration with clinical and IT stakeholders to optimize systems and share good practices across care sectors. Medicines are the most common therapeutic intervention in the United Kingdom’s National Health Service (NHS). However, it is estimated that between 30% and 50% of medicines prescribed for long-term conditions are not taken as intended . More thPeople with long-term health conditions frequently transition between care settings; consequently, information about a patient’s medicines is regularly transferred or translated between systems. However, the point at which patients transfer across different interfaces of care is high risk and is associated with unintentional changes to medications, errors, and miscommunication . This caGood for you, good for us, good for everybody, highlighted that to reduce overprescribing, there is a need for better shared decision-making with patients; better guidance and support for clinicians; more alternatives to medicines, such as physical and social activities and talking therapies; and more structured medication reviews for those with long-term health conditions , actually that should be flagging up a risk” (GP 006). A GP recalled a “significant incident where the GP hadn’t put down [methotrexate] or- on the GP record was not methotrexate, and they [the patient] ended up in an ITU in Wales and [the staff] didn’t know that the patient was on methotrexate and had actually accidentally overdosedParticipants raised concerns on specific challenges associated with the digital tools used to optimize medications. These included the use of multiple systems and workflow, interoperability, digital gaps, IT systems management, and change management.“the more you’re having to step out of your day-to-day workflows and go, ‘Oh my goodness, I really must remember to send a DMS [Discharge Medicines Service] referral for this thing’. You’re just not going to do it” (Pharmacist 010):Participants working across all settings described the need to interact with multiple IT systems as a part of their day-to-day role. Those working in general practice, for example, would access a core EHR system alongside other systems for viewing additional information, such as hospital notes, appointment letters, or blood tests. Community pharmacists described navigating between a growing number of different systems to fulfill different tasks and purposes (refer to the quote below) and felt that exposure to “more interfaces, [presented] [...] more opportunities [...] for information to have to be re-transcribed [and] [...] actually alert tasks to get dropped, because the right people can’t see [what needs to be done]” (Pharmacist 010). They emphasized how On a Sunday, I do a COVID clinic, so I've got Q-Flow open, which is the appointments booking system [...] I’ve got PharmOutcomes open for CPCS referrals via 111. I've got PharmOutcomes open for other things, any other bits and pieces that might come. I've got Outcomes4Health, which is the sister platform. That’s open for recording the COVID vaccinations. Then we've got the...What else is there? There are half a dozen different things there. Of course, in the pharmacy clinical system, we [they] use Positive Solutions Analyst, but we’d have that open as well.Pharmacist 007A GP described how community nurse practitioners do not have access to the full EHR of certain patients in their care. This occurred because the community nurses were employed by the local hospital rather than by the GP practice, and the 2 organizations used different IT systems, which did not share data in real time. Consequently, automated checks such as drug-laboratory checks or drug-interaction checks are not reliable. There was the risk that if community nurses “don’t have the blood results in their system [so] they will not get that [computerised] warning, so they may merrily go ahead and prescribe that [medication]. Then conversely, if they’ve prescribed a drug, I [the GP] don’t know that the interactions are there now” (GP 012).The participants revealed important gaps in the availability of health data that could not be easily shared or used by health care professionals, for example, paper-based hospital notes. A locally shared health record for people living in NENC known as the “Great North Care Record” (GNCR) is currently in development, with the aim of providing health and care workers access to current medical information. However, 1 GP highlighted how their local acute hospital trust only imported some “very, very, primitive data” into the GNCR and so was not “hugely valuable” (GP 012). In addition, data from social care, for example, care homes, were not imported into the GNCR, which meant that “any changes that are made there are not displayed” (GP 006). In contrast, however, more digitally advanced hospitals transferred a greater quantity of information from their EHR into the GNCR, which was “more useful” (GP 012). This raised the possibility of inequalities among health care providers because organizations “that are [digitally] further behind are the ones that...The Great North Care Record doesn’t help” (GP 012).Some professional sectors, such as community pharmacy, were also unable to access the GNCR, which made it “really difficult” to maximize use of that workforce and “shift patients away from some of those higher acuity services” (Pharmacist 003). Furthermore, information governance arrangements for accessing multiple systems were considered problematic. For example, 1 pharmacist suggested that the current consent model whereby community pharmacists must obtain consent before accessing information within the summary care record was inappropriate because “if you’ve got a patient’s prescription it should almost imply by informed consent, they’ve given you their script” (Pharmacist 005).Participants also revealed a low adoption of standardized digital codes for documenting clinical data within health systems. There are “a lot of trusts [that]don’t use dm+d” (Pharmacist 002), and many hospitals are “not using SNOMED at the moment” (GP 006); without adoption of the standards, large initiatives such as shared patient medication records are “not going to work” (Pharmacist 002). Dictionary of medicines and devices is a dictionary of descriptions and codes, which represent medicines and devices used across the NHS. Systematized Nomenclature of Medicine Clinical Terms is a structured clinical vocabulary for use in EHRs and covers diagnoses, procedures, etc.Finally, the participants noted how certain services were being rolled out without a supportive digital infrastructure. For example, the national hypertension case finding service in community pharmacies lacked “a national system for reporting it [blood pressure] [and reporting] between the two [pharmacy to GP]” (Pharmacist 011). Consequently, a range of different communication techniques, including email, letter, or pilot digital platforms, were being used, depending on local arrangements, and as data were not collected in a standardized digital format, it could not be transferred between care settings in an interoperable way.Participants suggested that a lack of minimum standards or mandating how services are technically delivered is problematic and contributes to low adoption and delays in rolling out clinical services and digital solutions:So pharmacy DMS transmissions, we launched the DMS service but pharmacies [are] not seeing many of them because yes you can do it by snail mail and NHS Mail, but that’s not good enough. We shouldn’t launch a service without a platform to deliver it on. So every hospital should be told, “You can have your own, but we’re launching this new service and you must be able to provide a digital solution that’s integrated.”Pharmacist 005” (Pharmacist 020). A new service or digital tool was developed to limit duplication and unnecessary costs. Another pharmacist added the following:A need was identified to rationalize the number of digital systems used, create clear expectations for suppliers, and develop standards and frameworks that outline how services should be digitally enabled. This would reduce waste from “reinventing the wheel every single timeI think there needs to be a suite of expectations that everybody needs to have and it’s the same with hospitals, you can’t have a hospital system that doesn’t do these 10 things [...] every system needs to do that by a certain deadline.Pharmacist 005Change management was seen as important for managing the future development of digital medicines optimization services. For instance, although the clinical terminology standards have now been defined in the Systematized Nomenclature of Medicine (SNOMED) and dictionary of medicines and devices (dm+d), “the hard bit is to come, which is the adoption and more importantly the transformation around that. There’s also a Hearts and Minds piece” (Pharmacist 002). Similarly, participants described concerns regarding data sharing, for instance:If you suggest [data sharing] to some general practices, they’ll say: “No chance. Nobody should have access to that data.” But once you get over that barrier, and there's a bit of trust built into it, then you can start adding to it.Pharmacist 003Instead, all health care professionals need to work together to “best serve the needs of the patients” (Pharmacist 019).Participants revealed several ambitions for the future of digital medicines optimization services, although the need for a single shared consolidated medication record, giving all health and care professionals access to data, was a clear priority and reflected those working across care sectors:One record across all organizations, that’s the blue-sky thinking. The data would sit in a data repository that would be coded and accessible, via APIs, via front-end systems that could be customised to be targeted to how GPs work, targeted too how secondary care clinicians work, targeted for acute and outpatient mental health. Fundamentally, all the data would be held in one central repository for that patient and all of the systems can pull in all that data. A patient, for example from a prescribing basis, would have one prescribing record. That prescribing record would continue out of hospital, into hospital.GP 012“open up a number of opportunities [...] for optimisation and proper management of patients and overprescribing” (Pharmacist 002). Furthermore, by identifying and using common digital architectures and standards, such records may be linked in the future.This would Some participants were worried that increased access to information could be problematic in some situations, for example, community pharmacists could have “too much information, to make a decision on” because “you could spend hours and hours and hours trailing back through communications and stuff that gets put onto records, [which] it’s probably completely inappropriate to the query” (Pharmacist 018). Consequently, several participants suggested involving end users in the development of shared records and posed that for “a sector and a workforce like community pharmacy, I think it’s big enough to warrant having a bespoke solution developed for it” (Pharmacist 001). A change in funding arrangements was also discussed as vital to support and incentivize community pharmacists to deliver clinical services at scale and to justify the need for access to shared care records in the first instance.There were hopes that the enhanced availability of medication data could improve workflows across care settings and population health management. Improved efficiency may be realized, for example, by sending a coded list of a patient’s medications from one system to another, so that a clinician only has to “go click, click, click, and it populates the prescribing system” (Pharmacist 010). In addition, to support better interprofessional working and better continuity of care, participants thought it would be good if they could send a “request, where you’ve got specific things that you want following up” (Pharmacist 010) alongside any information and context about a patient’s medication, directly between systems.Participants also discussed how the development of a comprehensive shared patient record could serve as a “population health platform” (Pharmacist 002). It would then be possible to “start interrogating the information at a patient level, but [also] at a population level” (Pharmacist 002) and target public health challenges such as “overprescribing, opiate prescribing, valproate [prescribing in pregnancy]” (Pharmacist 002). Digital tools could also support better clinical prioritization, for example:If you've got 100 Primary Care Network pharmacists delivering a structured medication review every year or so, that's 1,000 reviews a week. How do you know which 1,000 patients put in for those slots? How do you caseload? That's really important.Pharmacist 016Comprehensive patient data repositories could enable clinicians to develop robust strategies to identify patients more efficiently, to avoid “each practice pharmacist going out and trying to design their own searches” (Pharmacist 013). It was clear that there are major opportunities arising from more effective data sharing, and as 1 pharmacist remarked, there are likely innovations that health care professionals have not even started to dream about.This research has identified several challenges and potential opportunities related to the use of digital tools for delivering medicines optimization, which are categorized under 3 key concepts: transfer of care issues, challenges of digital tools, and future hopes and opportunities. There is substantial complexity in the number of various medicines management systems used throughout the region and the challenges associated with incomplete patient records. The use of multiple systems also affects the user workflow. There was a lack of intrasystem and intersystem interoperability and important gaps in digital data in some settings . Several problems related to IT systems management and change management have also been described. Participants described a clear need for a patient-centered consolidated integrated health record for use by all health and care professionals across different sectors, bridging those working in primary, secondary, and social care.We also identified a series of recommendations relevant to health service managers, policy makers, and clinical staff, which are discussed in The provision of health services in the United Kingdom needs to substantially change to meet the needs of an aging population, with a key focus on more integrated care across health and care settings to local needs . This rewith end users to ensure the design and functionality is “fit for purpose.” Specifically, participants raised the question of developing tailored solutions, that is, a bespoke community pharmacy view of a patient’s health record, to enhance the usability and utility of such systems. Research has shown how the design of EHRs can influence behavior and prescribing safety [In our study, participants highlighted that the need to undertake the process of developing shared records g safety ,39; therParticipants also expressed specific ways in which data could be used to better support the transfer of care, for instance, sending digital referrals or requests for follow-up directly between existing clinical systems, further demonstrating the need for continued engagement and collaboration with end users involved in the delivery of frontline services to optimize and enhance systems over time .Pharmacy 2030: a professional vision document, which outlines the changes to and enhanced roles of pharmacy professionals and key enablers, including data to inform decision-making, harnessing digital technology, developing the workforce, and increasing emphasis on multidisciplinary work [To fully harness the benefits of a comprehensive and consolidated shared patient record, there is a need to address digital gaps within organizations across the health and social care sector. The effectiveness and utility of the tool depends on the data within. First, organizations must prioritize the use of established and approved digital information standards related to medicines and clinical information within NHS digital systems. Notably, all NHS care providers who are involved in prescribing, dispensing, or administering medicines must transfer medication information using the newest UK version of fast health care interoperability resources, use approved dose syntax to transfer the amount of medication per dose as a simple coded quantity, and use SNOMED and dm+d codes for allergy or intolerance information by March 31, 2023 . Howeverary work . A furthTo support the delivery of enhanced medicines optimization activities across care settings, there will be an increased emphasis on pharmacists and pharmacy staff undertaking clinical roles in all sectors. Community pharmacies, for example, will have a far greater role in providing enhanced clinical services and supporting the holistic prevention of ill health in a community ,49. The We acknowledge some limitations of this study; semistructured interviews were conducted via web-based videocall platforms, which enabled participants across a large geographical area to participate; however, we did encounter some technical issues, which may have impacted the flow and nature of discussions. We only included 2 GPs in this study; however, 5 primary care and clinical commissioning group pharmacists who provided in-depth detail about the experiences of medicines optimization of health care professionals working within GP practices were recruited, and data were collected until thematic saturation was reached. Further work may specifically explore the challenges experienced within different sectors and enhanced by using observational data collection approaches. Furthermore, the interviewer was professionally known to a small number of participants before the study, and her experience as a practicing pharmacist and academic researcher enabled her to build rapport and relationships with the participants. Throughout data collection and analysis, notes were recorded on any personal reactions or reflections to support consideration of the intersubjective reflexivity between herself and the participants . This waThe findings from this qualitative study of 23 clinical and IT stakeholders identified major complexity in terms of the number of different systems used throughout the NENC region and identified several important challenges in the transfer of care issues, focusing on having access to incomplete patient records. We also highlighted important barriers related to the use of digital tools, such as multiple systems and workflow, interoperability, digital gaps, IT systems management, and change management. Finally, participants discussed their future hopes and opportunities for the provision of medicines optimization services in the future, and there was a clear need for a patient-centered consolidated integrated health record for use by health and care professionals across different sectors, which would be fundamental to delivering effective and safe patient care. Further specific priorities were around understanding the vision for pharmacy services and supporting it with appropriate funding arrangements and strategic planning of the workforce, adoption of digital information standards, and development of minimal system requirements and frameworks. In addition, IT system management to reduce unnecessary repetition and, importantly, meaningful and continued collaboration with stakeholders and system suppliers to optimize systems and share good practices across care sectors were important key enablers.