SCALS Case Study 1
Integrated Care in Practice: a study of health and social care for adults with complex needs considered to be at high risk of hospital admission (sub-regional case study)
MethodologyThe ‘real-world’ problem of integrated care as it is being pursued in one area of outer London provides the starting point for this case. The lead researcher for the site is a part-time DPhil student and a part-time senior NHS manager at a Clinical Commissioning Group, seconded to the research team.
The overall approach is to examine the development of integrated care as a social process situated in a highly complex and changing health and social care system; influenced by social, political and historical forces; and to examine the delivery of integrated care as a social practice (that is, made up of human actions and interactions situated and performed in a particular place or setting). This interpretive approach to integrated care leads to an examination of the practice (what people actually do when they are “doing” integrated care); the meaning (what matters to those giving and receiving integrated care) and the world within which integrated care is enacted (including the particular set of ideas or dominant discourse that produces the activities of integrated care as well as an understanding of material constraints and lived experience). To do this Gemma is developing an in-depth case study, including ethnographic fieldwork to access people’s experience of integrated care, which necessarily foregrounds everyday activities and material reality.
Summary of study designThis is a single-site, cross-sector, mixed methods case study, drawing on action research principles to examine how and why multiple organisations from primary, community, secondary and social care attempt to provide integrated care for a sample group of patients/service-users. The intention is to affect change in the case through reflexive practice that will help identify and support service improvements. This possibility is enhanced by Gemma’s “insider” role, immersed in the site and able to initiate reflexive discussions both with a multi-sector steering group and other colleagues. The case study is being developed by:
- “zooming in” on the patient/service-user experience, using ethnographic methods to access research participants’ experience and to study the practice of integrated care; and
- “zooming out” by analysing documents and data within the site, to help understand how these experiences are shaped, or not, by the way in which health and social care services are organised.
FieldworkAn 18-month period of fieldwork, currently drawing to an end, has been carried out to gather data to develop the case study. Fieldwork has focused on researching three main strands of inquiry:
- The patient/service-user experience of integrated care
- The practice of integrated care
- The implementation of the policy of integrated care through local innovations.
After an initial pilot in 2014, 20 research participants were recruited in 2014-15, varying in terms of age, ethnicity, social circumstances and health conditions, from the pool of people who are or have been receiving “integrated case management” – an approach which has been implemented in the study site over the last few years to provide preventative care to people identified as being at high risk of hospital admission. Ethnography and interviews in the home with participants and carers, including study of medical records, was used to understand the patient/service-user experience in the home and in health care settings. Participants have been in the study for between 3 and 18 months. This part of the dataset reflects the day-to-day experience of living with multiple chronic conditions and accessing a range of health and social care services in the study site.
Practice of integrated careBuilding on the research into the patient experience of care, which includes observation of professional practice (as well as informal caring arrangements), an exploration of the professional practice of integrated care is being undertaken through additional observations (taking an ethnographic approach) of a purposive sample of health and social care practitioners going about their daily practice, including multi-disciplinary meetings as well as individual case/clinical work. This has been supplemented by interviews with selected professionals and review of documents and datasets used to support their work (e.g. patient/service-user electronic records, assessment and referral forms). These data provide an insight into the practice(s) of integrated care in the site.
Policy and local innovationsThe implementation of national policy relating to integrated care and the development of local innovations through commissioning is being researched through participant-observation in the site (as part of Gemma’s CCG role) and sampling of documents generated and used within the site. These data provide insights into the complicated nature of organisational arrangements in the site, the history of organisational change in the site, and the influence of national policy on local developments.
The wider contextIn addition to the three strands of inquiry described above, the experience of fieldwork has also generated a strong sense of time and place, providing a deepening understanding of the wider “context” shaping the case including geographic, historic and political particularities that affect the people and institutions of interest.
Steering GroupA participatory approach to the study is made possible by the establishment of a multi-agency steering group that includes lay and patient/public representation. The steering group has advised on sampling of research participants and has supported access to data collection. The group has reviewedsummaries of the data, including case summaries from the patient research participants, and discussed how these data might affect service developmentsEmerging Findings
The study is not yet at the stage where findings can be firmly articulated, as data analysis is not yet complete, however, some reflections from the experience of conducting fieldwork are outlined below.
Invisibility of lived experience in policy discourse: The lived experience, including the material and bodily needs, of patients/service-users (and their unique, complex and changing needs) is not visible in the policy discourse, other than perhaps through the material provision of particular technologies (see below). This suggests that the aims of integrated care might need to be re-aligned to reflect what matters to patients.
What matters to people: The things that matter to people, and in particular the things that bother them, are not necessarily those that are of most concern to their doctor, or other professionals. It is the “little things” that make a difference (positively or negatively) to their daily lives, the niggling symptoms of an infection or the difficulty in washing their own bodies that causes them greatest distress, and not necessarily the “bigger” clinical concerns such as life-limiting illnesses. As such, care/healthcare might not central to their concerns.
Use of technology: The material needs of patients can be seen to surface in the policy discourse in terms of technology that might help them live more independently, however the use of this technology is not necessarily aligned to their needs. The technology that is used by professionals in their daily practice (intended at times to reduce administrative work) generates specific work and affects working practices.
Nothing new under the sun? Integrated care is presented as being new, innovative, with efforts to integrate care being described as pioneering and as pilots, however there is a long history of practitioners working to coordinate their efforts in the study site to best meet the needs of their patients/service-users.
Integration as an ongoing activity/social process: Integrated care is not a “do-once activity”, rather the people involved in integrating care, including patients/service-users whose work to do this can be considerable, continually and effort-fully work at this process through their daily interactions with each other.