Assessing the impacts of community participation policy and practice in Scotland and England

Background: Community participation has become an integral part of many areas of public policy over the last two decades. For a variety of reasons, ranging from concerns about social cohesion and unrest to perceived failings in public services, governments in the UK and elsewhere have turned to communities as both a site of intervention and a potential solution. In contemporary policy, the shift to community is exemplified by the UK Government’s Big Society/Localism agenda and the Scottish Government’s emphasis on Community Empowerment. Through such policies, communities have been increasingly encouraged to help themselves in various ways, to work with public agencies in reshaping services, and to become more engaged in the democratic process. These developments have led some theorists to argue that responsibilities are being shifted from the state onto communities, representing a new form of 'government through community' (Rose, 1996; Imrie and Raco, 2003). Despite this policy development, there is surprisingly little evidence which demonstrates the outcomes of the different forms of community participation. This study attempts to address this gap in two ways. Firstly, it explores the ways in which community participation policy in Scotland and England are playing out in practice. And secondly, it assesses the outcomes of different forms of community participation taking place within these broad policy contexts. Methodology: The study employs an innovative combination of the two main theory-based evaluation methodologies, Theories of Change (ToC) and Realist Evaluation (RE), building on ideas generated by earlier applications of each approach (Blamey and Mackenzie, 2007). ToC methodology is used to analyse the national policy frameworks and the general approach of community organisations in six case studies, three in Scotland and three in England. The local evidence from the community organisations’ theories of change is then used to analyse and critique the assumptions which underlie the Localism and Community Empowerment policies. Alongside this, across the six case studies, a RE approach is utilised to examine the specific mechanisms which operate to deliver outcomes from community participation processes, and to explore the contextual factors which influence their operation. Given the innovative methodological approach, the study also engages in some focused reflection on the practicality and usefulness of combining ToC and RE approaches. Findings: The case studies provide significant evidence of the outcomes that community organisations can deliver through directly providing services or facilities, and through influencing public services. Important contextual factors in both countries include particular strengths within communities and positive relationships with at least part of the local state, although this often exists in parallel with elements of conflict. Notably this evidence suggests that the idea of responsibilisation needs to be examined in a more nuanced fashion, incorporating issues of risk and power, as well the active agency of communities and the local state. Thus communities may sometimes willingly take on responsibility in return for power, although this may also engender significant risk, with the balance between these three elements being significantly mediated by local government. The evidence also highlights the impacts of austerity on community participation, with cuts to local government budgets in particular increasing the degree of risk and responsibility for communities and reducing opportunities for power. Furthermore, the case studies demonstrate the importance of inequalities within and between communities, operating through a socio-economic gradient in community capacity. This has the potential to make community participation policy regressive as more affluent communities are more able to take advantage of additional powers and local authorities have less resource to support the capacity of more disadvantaged communities. For Localism in particular, the findings suggest that some of the ‘new community rights’ may provide opportunities for communities to gain power and generate positive social outcomes. However, the English case studies also highlight the substantial risks involved and the extent to which such opportunities are being undermined by austerity. The case studies suggest that cuts to local government budgets have the potential to undermine some aspects of Localism almost entirely, and that the very limited interest in inequalities means that Localism may be both ‘empowering the powerful’ (Hastings and Matthews, 2014) and further disempowering the powerless. For Community Empowerment, the study demonstrates the ways in which community organisations can gain power and deliver positive social outcomes within the broad policy framework. However, whilst Community Empowerment is ostensibly less regressive, there are still significant challenges to be addressed. In particular, the case studies highlight significant constraints on the notion that communities can ‘choose their own level of empowerment’, and the assumption of partnership working between communities and the local state needs to take into account the evidence of very mixed relationships in practice. Most importantly, whilst austerity has had more limited impacts on local government in Scotland so far, the projected cuts in this area may leave Community Empowerment vulnerable to the dangers of regressive impact highlighted for Localism. Methodologically, the study shows that ToC and RE can be practically applied together and that there may be significant benefits of the combination. ToC offers a productive framework for policy analysis and combining this with data derived from local ToCs provides a powerful lens through which to examine and critique the aims and assumptions of national policy. ToC models also provide a useful framework within which to identify specific causal mechanisms, using RE methodology and, again, the data from local ToC work can enable significant learning about ‘what works for whom in what circumstances’ (Pawson and Tilley, 1997).

Studies of antihypertensive drug persistence and adherence in the Glasgow Blood Pressure Clinic

Hypertension (HTN) is a major risk factor for cardiovascular diseases including stroke, coronary heart disease (CHD), chronic renal failure, peripheral vascular disease, myocardial infarction, congestive heart failure and premature death. The prevalence of HTN in Scotland is very high and although a high proportion of the patients receive antihypertensive medications, blood pressure (BP) control is very low. Recommendations for starting a specific antihypertensive class have been debated between various guidelines over the years. Some guidelines and HTN studies have preferred to start with a combination of an antihypertensive class instead of using a single therapy, and they have found greater BP reductions with combination therapies than with monotherapy. However, it has been shown in several clinical trials that 20% to 35% of hypertensive patients could not achieve the target BP, even though they received more than three antihypertensive medications. Several factors were found to affect BP control. Adherence and persistence were considered as the factors contributing the most to uncontrolled hypertension. Other factors such as age, sex, body mass index (BMI), alcohol intake, baseline systolic BP (SBP), and the communication between physicians and patients have been shown to be associated with uncontrolled BP and resistant hypertension. Persistence, adherence and compliance are interchangeable terms and have been used in the literature to describe a patient’s behaviour with their antihypertensive drugs and prescriptions. The methods used to determine persistence and adherence, as well as the inclusion and exclusion criteria, vary between persistence and adherence studies. The prevalence of persistence and adherence have varied between these studies, and were determined to be high in some studies and low in others. The initiation of a specific antihypertensive class has frequently been associated with an increase or decrease in adherence and persistence. The tolerability and efficacy of the initial antihypertensive class have been the most common methods of explaining this association. There are also many factors that suggest a relationship with adherence and persistence. Some factors in previous studies, such as age, were frequently associated with adherence and persistence. On the other hand, relationships with certain factors have varied between the studies. The associations of age, sex, alcohol use, smoking, baseline systolic blood pressure (SBP) and diastolic BP (DBP), the presence of comorbidities, an increase in the number of pills and the relationship between patients and physicians with adherence and persistence have been the most commonly investigated factors. Most studies have defined persistence in terms of a patient still taking medication after a period of time. A medication possession ratio (MPR) ≥ 80 has been used to define compliance. Either of these terminologies, or both, have been used to estimate adherence. In this study, I used the same definition for persistence to identify patients who have continued with their initial treatment, and used persistence and MPR to define patients who adhered to their initial treatment. The aim of this study was to estimate the prevalence of persistence and adherence in Scotland. Also, factors that could have had an effect on persistence and adherence were studied. The number of antihypertensive drugs taken by patients during the study and factors that led to an increase in patients being on a combination therapy were also evaluated. The prevalence of resistance and BP control were determined by taking the BP after the last drug had been taken by persistent patients during five follow-up studies. The relationship of factors such as age, sex, BMI, alcohol use, smoking, estimated glomerular filtration rate (eGFR), and albumin levels with BP reductions for each antihypertensive class were determined. Information Services Division (ISD) data, which includes all antihypertensive drugs, were collected from pharmacies in Scotland and linked to the Glasgow Blood Pressure Clinic (GBPC) database. This database also includes demographic characteristics, BP readings and clinical results for all patients attending the GBPC. The case notes for patients who attended the GBPC were reviewed and all new antihypertensive drugs that were prescribed between visits, BP before and after taking drugs, and any changes in the hypertensive drugs were recorded. A total of 4,232 hypertensive patients were included in the first study. The first study showed that angiotensin converting enzyme inhibitor (ACEI) and beta-blockers (BB) were the most prescribed antihypertensive classes between 2004 and 2013. Calcium channel blockers (CCB), thiazide diuretics and angiotensin receptor blockers (ARB) followed ACEI and BB as the most prescribed drugs during the same period. The prescription trend of the antihypertensive class has changed over the years with an increase in prescriptions for ACEI and ARB and a decrease in prescriptions for BB and diuretics. I observed a difference in antihypertensive class prescriptions by age, sex, SBP and BMI. For example, CCB, thiazide diuretics and alpha-blockers were more likely to be prescribed to older patients, while ACEI, ARB or BB were more commonly prescribed for younger patients. In a second study, 4,232 and 3,149 hypertensive patients were included to investigate the prevalence of persistence in the Scottish population in 1- and 5-year studies, respectively. The prevalence of persistence in the 1-year study was 72.9%, while it was only 62.8% in the 5-year study. Those patients taking ARB and ACEI showed high rates of persistence and those taking diuretics and alpha blockers had low rates of persistence. The association of persistence with clinical characteristics was also investigated. Younger patients were more likely to totally stop their treatment before restarting their treatment with other antihypertensive drugs. Furthermore, patients who had high SBP tended to be non-persistent. In a third study, 3,085 and 1,979 patients who persisted with their treatment were included. In the first part of the study, MPR was calculated, and patients with an MPR ≥ 80 were considered as adherent. Adherence rates were 29.9% and 23.4% in the 1- and 5-year studies, respectively. Patients who initiated the study with ACEI were more likely to adhere to their treatments. However, patients who initiated the study with thiazide diuretics were less likely to adhere to their treatments. Sex, age and BMI were different between the adherence and non-adherence groups. Age was an independent factor affecting adherence rates during both the 1- and 5-year studies with older patients being more likely to be adherent. In the second part of the study, pharmacy databases were checked with patients' case notes to compare antihypertensive drugs that were collected from the pharmacy with the antihypertensive prescription given during the patient’s clinical visit. While 78.6% of the antihypertensive drugs were collected between clinical visits, 21.4% were not collected. Patients who had more days to see the doctor in the subsequent visit were more likely to not collect their prescriptions. In a fourth study, 3,085 and 1,979 persistent patients were included to calculate the number of antihypertensive classes that were added to the initial drug during the 1-year and 5-year studies, respectively. Patients who continued with treatment as a monotherapy and who needed a combination therapy were investigated during the 1- and 5-year studies. In all, 55.8% used antihypertensive drugs as a monotherapy and 44.2% used them as a combination therapy during the 1-year study. While 28.2% of patients continued with treatment without the required additional therapy, 71.8% of the patients needed additional therapy. In all, 20.8% and 46.5% of patients required three different antihypertensive classes or more during the 1-year and 5-year studies, respectively. Patients who started with ACEI, ARB and BB were more likely to continue as monotherapy and less likely to need two more antihypertensive drugs compared with those who started with alpha-blockers, non-thiazide diuretics and CCB. Older ages, high BMI levels, high SBP and high alcohol intake were independent factors that led to an increase in the probability of patients taking combination therapies. In the first part of the final study, BPs were recorded after the last drug had been taken during the 5 year study. There were 815 persistent patients who were assigned for this purpose. Of these, 39% had taken one, two or three antihypertensive classes and had controlled BP (controlled hypertension [HTN]), 29% of them took one or two antihypertensive classes and had uncontrolled BP (uncontrolled HTN), and 32% of the patients took three antihypertensive classes or more and had uncontrolled BP (resistant HTN). The initiation of an antihypertensive drug and the factors affecting BP pressure were compared between the resistant and controlled HTN groups. Patients who initiated the study with ACEI were less likely to be resistant compared with those who started with alpha blockers and non-thiazide diuretics. Older patients, and high BMI tended to result in resistant HTN. In the second part of study, BP responses for patients who initiated the study with ACEI, ARB, BB, CCB and thiazide diuretics were compared. After adjusting for risk factors, patients who initiated the study with ACEI and ARB were more respondent than those who took CCB and thiazide diuretics. In the last part of this study, the association between BP reductions and factors affecting BP were tested for each antihypertensive drug. Older patients responded better to alpha blockers. Younger patients responded better to ACEI and ARB. An increase in BMI led to a decreased reduction in patients on ACEI and diuretics (thiazide and non-thiazide). An increase in albumin levels and a decrease in eGFR led to decreases in BP reductions in patients on thiazide diuretics. An increase in eGFR decreased the BP response with ACEI. In conclusion, although a high percentage of hypertensive patients in Scotland persisted with their initial drug prescription, low adherence rates were found with these patients. Approximately half of these patients required three different antihypertensive classes during the 5 years, and 32% of them had resistant HTN. Although this study was observational in nature, the large sample size in this study represented a real HTN population, and the large pharmacy data represented a real antihypertensive population, which were collected through the support of prescription data from the GBPC database. My findings suggest that ACEI, ARB and BB are less likely to require additional therapy. However, ACEI and ARB were better tolerated than BB in that they were more likely to be persistent than BB. In addition, users of ACEI, and ARB have good BP response and low resistant HTN. Linkage patients who participated in these studies with their morbidity and mortality will provide valuable information concerning the effect of adherence on morbidity and mortality and the potential benefits of using ACEI or ARB over other drugs.