The Social Context Shaping the PCs

According to the organization representatives, the social context includes macro-level developments, such as demographic changes, technological advancements, and power structures like ageism. It also includes sudden and unexpected events such as the COVID-19 pandemic, which all affect the practical conditions for participation initiatives. These factors also influence the prioritization of issues in the problem and policy streams, ultimately shaping the potential impact of the PCs.

Despite being a growing demographic group, older citizens often face limited influence and low status in society, according to many of our respondents. In particular, they struggle to make their voices heard in political decision-making and are underrepresented in decision-making bodies like the Swedish parliament. This ageism motivates the PCs according to both politicians and organization representatives. There are several examples in the interviews of the low status of the PCs; how they struggle to get politicians interested in issues concerning the older population and to prioritize the PCs feedback on different policy issues.

Ageism is concretely expressed in healthcare policies developed in the regions, as many policy decisions fail to address the practical needs and challenges encountered by older citizens. The minutes from the PC meetings indicated that accessibility was a major concern. The centralization of healthcare services within regions poses a challenge for the older population due to mobility issues and the respondents brought up difficulties faced by the older individuals living in rural areas or small towns with limited access to healthcare. The representatives mentioned long waiting times at emergency rooms as an issue they often raise, which is particularly challenging for this citizen group who may find it harder and more painful to sit uncomfortably for hours.

Another example of a societal development that heavily influences what the PCs discuss is digitalization. Everything from obtaining a free coupon for collective transportation to healthcare appointments, accessing information, and communicating with healthcare services, requires digital knowledge. Many respondents also consider this to be ageism.

Sometimes people forget that us older people may not be as quick and skilled with our hands. It takes us longer to do things, and our hands might tremble. We might accidentally press the wrong button, and then we have to start all over again. And you get nervous on such occasions… So, it is difficult for older people to reach the healthcare centre, for example. Something simple to others can be quite challenging. (Respondent 2)

The COVID-19 pandemic is an example of a disruptive factor that heavily influenced the older population and, consequently, the work of PCs during the time of the study. Interviews revealed that older people were traumatized by the pandemic and forced into passivity, while also being subjected to increased attention from policymakers and healthcare decision-makers. The inadequate treatment of the most vulnerable older adults led to debates within the healthcare regions and the PCs, but at the same time, there was a low level of activity in the PCs and the pensioner organizations during the pandemic. While PC meetings continued digitally, the low activity in pensioner organizations hindered discussions and engagement.

The PCs as Public Participation Initiatives

PCs are standing committees (councils) with recurring meetings with the same group of people throughout the political term, which lasts for four years. The council includes leading and oppositional politicians, along with representatives from pensioner interest organizations, enabling continuous discussions. One leading politician expressed a preference for this approach over individual initiatives from advocacy organizations, stating:

When you meet with individual interest organizations, my experience is that you often start over at the exact same place as you were the last time. So, you grind the same issue over and over again and don’t really make progress. (Respondent 8)

Another interviewed politician highlighted the strong benefit of advisory councils as a guarantee that both sides in a discussion share the same understanding of an issue: “It is better to have your enemies around the table than to have them standing outside with placards. That benefits no one, unlike having a shared understanding.” (Respondent 3).

According to council regulations, the formal function of the PCs is to be advisory. However, some respondents are dissatisfied with this advisory status and would prefer being a formal referral body. The interviews revealed different understandings of the function, with some seeing it as a forum for advocacy while others view it primarily as a platform for information sharing. Additionally, PCs were described as serving as a bridge between the region and the policy community/public or as a capacity-building tool for the policy community. These topics will be discussed further in the next section. These points are also evident in the minutes, where discussions on developing the council through education and collaboration with other PCs are common.

During the meetings, there is a strong focus on the regions providing information to the organization representatives. The purpose of this information sharing and the expectations for the representatives’ actions regarding it are important topics discussed in the interviews, which we will discuss below. The healthcare policy field is complex, and some interviewees question whether the PCs have enough knowledge to participate in policy debates. Examples were given where politicians put an issue on the meeting agenda with the aim of educating representatives on a specific issue’s background, allowing them to better understand the motives behind a political decision. Taken together, the PCs serve multiple functions, although the formal documents emphasize their role in information exchange and advisory capacity.

The credibility of the PCs is closely tied to the quality of representation among organization representatives and the political clout of participating politicians. Typically, high-profile politicians lead the work of PCs. However, the lack of engagement among some less influential politicians is a recurring theme in interviews as it questions the council’s status and, consequently, its credibility. Respondents note that the individuals engaged in PCs are often seasoned “lobbyists” who have worked as local politicians for many years, giving them extensive knowledge of the local political system and healthcare policy issues. Nevertheless, some respondents express frustration regarding the engagement of their own organizations. Many struggle to get the attention of their local organizations, and few members, or even leaders, may know about their representation in the PC. The issue of representation is examined further under its own analytical category.

Policy Community

The PCs operate within a policy community that has both vertical and horizontal dimensions, as revealed by the interviews. The community involves networks and relationships between actors at both the regional and municipal levels, as elderly care in Sweden is the responsibility of municipalities while healthcare is the responsibility of regions. Moreover, Swedish interest organizations are typically organized in a federative manner with local branches, regional/district boards, and national offices. The PCs with participating politicians exist at both the municipal and regional levels. Looking only at the regional level, highlighting the horizontal dimension of this policy community, PCs were described by the respondents as serving as a bridge between the region and the policy community or as a capacity-building tool for the policy community. These points are also evident in the minutes, where discussions on developing the council through education and collaboration with other regional PCs are common.

The challenge of engaging members in regional PCs compared to municipal PCs was clearly expressed by organization representatives. Municipal councils deal with issues that are “close to home,” making it easier to get people involved and relate. The complex healthcare system and the larger geographical area of regions can make it difficult for people to form opinions or feel a connection to issues that may be affecting other parts of the region. As one organization representative pointed out, the scope of regional PCs can lead people to question the relevance of discussions about problems that may not directly affect them.

While the municipal level may be more engaging for participants, the availability of both levels of PCs benefits pensioner organizations’ advocacy work and the policy community. The federative structure of pensioner organizations allows them to work on multiple policy arenas simultaneously, sparking debates and drawing attention to their interests. Joint efforts between pensioner organizations to lobby for an improved PC status have also occurred, including making it compulsory for all regions to have a PC, changing their advisory role to a referral body, and providing financial compensation for participating.

In addition to the two levels of PCs, the policy community includes local patient councils attached to primary healthcare centres. These councils comprise representatives from patient, user, and pensioner organizations active in the PCs. For this reason, the pensioner organizations see themselves as having a bridging function; they can catch problems and issues in one council and present it to the other council, in hope of a stronger impact.

Representation Mechanisms Connecting PCs to the Policy Community

Many of the PC representatives are involved in various public participation initiatives, and many have a background in local politics. Active representatives tend to have extensive networks and platforms, indicating that they are professional public participants. As a platform for sharing experiences and promoting collaborations between organizations, the PC plays an important role in the policy community, of particular importance during the COVID-19 pandemic. Meeting minutes demonstrate that many representatives use the open discussion point to share with the other their organization’s plans and challenges. Overall, PCs enhance the capacity of the policy community by facilitating information sharing and collaborations across different governing levels.

The representation of active individuals within the PCs is a crucial aspect of how well the PCs reflect the needs and voices of the people it concerns. When being asked whom they represent, representatives differ in their views on whether they represent only the members of their organization or the older population in general.

Representation in these organizations is discussed in terms of how they can provide a channel for members to voice their concerns, but it is also about returning information from the participation initiatives such as the PC to the members. This involves gathering input from members in local organizations, deciding what to propose on the PC agenda, and finding forums to present the results of the meetings. The exact structure for this work varies between organizations, but there is a common understanding of the importance of this feedback loop. However, not all organizations have managed to establish functional routines for this, which is further discussed under the section of external impact.

In general, the issue of representation (and lack thereof) of older individuals in policy making is considered important and problematic by all respondents. Pensioner organizations are well aware that they do not represent those older individuals who are in the most need of healthcare and a voice. The individuals who are active in organizations and sit on these councils tend to be the most resourceful of the older people community. The respondents acknowledge that older people tend to leave as they require more assistance and utilize healthcare services more frequently, which leads to them losing the opportunity to voice their concerns through these organizations.

Problem Streams, Policy Streams and Policy WindowsProblem Stream

The interviews reveal that the issues brought up by the PC representatives originate mainly from two sources. The first is in response to public debates on healthcare services or other regional responsibilities, often inspired by local or national news on misconduct or long wait times. The second is from their own local organizations or national boards, highlighting issues that they find interesting to monitor or lobby for.

The pensioner organizations raise various issues, some of which are not widely discussed in the public debate despite being nationwide concerns. Representatives emphasize the importance of persistence, often revisiting issues in cycles until they receive attention. This approach is reflected in meeting minutes, where issues are revisited over a time span of several years, and representatives ask for feedback on previously discussed issues. Experienced representatives actively employ this “nagging” strategy, saying that “You can’t give up, you just have to keep on bringing it up. At some moment, it will break through” (respondent 2).

A PC chair confirms that if you miss an opportunity to time a discussion in the council with an expected political decision, you just wait until the next time the issue comes up. The PCs’ agenda setting has a cyclical nature, rather than quickly reacting to incidents and current events. Examples of recurring issues are access to vaccines and screening for prostate or breast cancer for the older population.

During the interviews, respondents highlighted various challenges, such as the digitalization of health care and its accessibility. While the PC can address some issues, such as digitalization, some problems identified were too complex for the PC or even regional politicians to resolve. For instance, the problem of recruiting healthcare professionals is a nationwide issue that requires a time-consuming process. Long waiting times and access to vaccinations also pose significant challenges. The PC representatives acknowledge that their role is limited in solving these problems. However, a politician suggested that PC representatives need not be healthcare experts to fulfil their responsibilities. Their primary role is to identify and raise concerns faced by the older population, and it is the politicians’ responsibility to find solutions to these problems.

Policy Stream

Although it is a simplification (Robinson & Eller, 2010), we consider the policy stream to be mainly driven by the political representatives in the PCs. The chair and vice chair of the PC are high-profile politicians in the region, often heads of healthcare or hospital boards. They have a unique overview of the healthcare policy processes in the region, and the chair is responsible for putting together the PC agenda. Besides these two leading politicians, there are usually a handful of politicians representing other parties but who do not necessarily have a seat in any regional political committees. Both politicians and representatives express confusion regarding the role of these politicians, for instance whether their role is to voice the position of their parties. This confusion was also confirmed by one of them, who expressed that their party never asked questions about the PC discussions. Some suggest that politicians start their careers in the PCs and then move up to more prioritized committees. In one PC, this issue made it into the minutes as a formal complaint several times, first in 2017, then in 2019, and later in 2020.

The budget policy stream is a recurring topic. As the regions have their own tax-based budgets, it is a core political conflict. The regional budget covers primarily healthcare (90%), but also includes collective transportation and culture to some extent. Due to its complex nature and preceding political negotiations, the budget is challenging to influence or change. Nonetheless, most PCs have included in their regulations that they should provide feedback and be involved in the budget process. From a political standpoint, the budget process is viewed as a crucial discussion that serves as the foundation for healthcare policy work throughout the year. However, they do not believe that the PC should have a significant impact on the budget. According to one politician: “… if you want to be involved in political decisions, you have to engage in a political party, because the PC should not be a shortcut to decisions. That is undemocratic.“ (Respondent 5)

In general, it appears that PCs require stability and predictability for representatives to plan, meet, and discuss their viewpoints together and gather input from members. Predictability enables politicians to schedule issues at the most opportune time in a policy stream and secure the best presenter, among other things. However, it may come at the cost of public initiatives if agenda-setting remains primarily in the hands of those already in power. Furthermore, policy streams that cover an extended period of time seem to provide an opportunity for the council to have a significant impact and be heard. Examples are long-term region projects that have invited the council to give feedback continuously, and even participate in reference groups and workshops, which have resulted in the council feeling heard and their feedback considered when forming the policy process.

Policy Window- The Meeting of Problem Stream and Policy Stream

Policymakers or public participants can identify and leverage an unexpected policy window, or they can strategically plan to create one by timing the introduction of specific issues onto the agenda.The interviews revealed several examples of unexpected policy windows, including the COVID-19 pandemic. One respondent speculated that her proposal for increased access to defibrillators was implemented due to an unexpected state subsidy to her municipality resulting from the pandemic. However, she had to leverage her contacts within the region to make it happen. Another example is the delayed care resulting from the pandemic, which brought attention to the longstanding issue of long waiting times and prompted extensive discussion even after the pandemic. Nonetheless, respondents noted that the complexity of the healthcare field makes it challenging to effect change quickly, rendering policy windows difficult to leverage for public participation initiatives. They are according to some respondents more suitable for the national level of the pensioner interest organizations.

A more common way of using policy windows in the context of PCs, as mentioned in interviews, is to plan and schedule meeting agendas to allow for timely discussions before a political decision is made on a given matter. Both administrators and politicians can determine the ideal timing for proposing a specific policy and suggest bringing it to the PC when they believe it is appropriate. Typically, the [timing of] policy decisions are known well in advance, which facilitates such planning:

… budget and plans and investments and such, you know about that very far in advance and then you can make sure that the PC gets information, gets the opportunity to give opinions in good time while preparing a matter. And then maybe you can come back when you start having proposals for decisions. (Respondent 7)

However, politicians admit that it can sometimes be difficult to schedule meetings because they occur infrequently throughout the year. There is always a risk that the meeting may be scheduled too early in a specific policy process, and that the next meeting may be too late. Although the politicians agree that it is important for the PC to be included early on in these processes, many of the representatives feel they are invited too late in the process.

Responses to Participation Initiatives - Internal and External ImpactInternal Impact - Governance Impact as Statements or Decisions

In this theme, we differentiate between the impact at governance level and operational level. Since the PCs are located at the political level, it is not a direct channel to the healthcare services. When asked to provide examples of issues where the council has contributed to a change or affected the policy process, most respondents gave vague responses such as “I really hope so“, “I need to believe that”, “They seem to listen to us,” or “They seem interested in what we have to say.” Concrete examples were rare, which was also the impression from the minutes that showed little actual policy input and a focus on information sharing. Some respondents noted that it may be easier to have an impact at the operational level, but this would require other participation initiatives or contacts, such as local patient councils at healthcare centres. In the discussions about their actual decision impact, many returned to the fact that the PC is not a decision-making body and does not have that possibility (even though some would prefer that). Instead, respondents tightly connect their ability to influence policy decisions with the role, power, and enthusiasm of the politicians in the councils and that the PCs’ impact is directly dependent on whether politicians are willing to bring the council’s feedback forward.

Moving on to the statement impact at the governance level, we observe that this is mainly achieved through participants providing feedback to civil servants in the preparation and implementation of policies. During the PC meetings, which mainly consist of civil servants or other experts presenting their ongoing work, most representatives direct their comments and feedback to the presenter. Nevertheless, the representatives assume that the politicians also listen and take note of what they say. However, the presenter may be better equipped to respond to their feedback and also see how their feedback can be brought forward. The representatives provide examples of giving feedback on how digital services can be developed favourably for the older population, or suggestions for how healthcare professionals should contact older peoples in a way that is comfortable and preferable, which does not need to involve political decision making.

The most successful examples of actual impact, as highlighted by both politicians and representatives, are those in which participants have been involved in longer policy processes and have been able to provide feedback multiple times on the issue. Participating in a reference group that arranges meetings solely with public participants and civil servants is considered an efficient way of having an impact, repeatedly and directly to those managing a project. It enables representatives to give feedback on smaller, practical issues that can be easily integrated. One politician agrees and says that this is a more effective way of influencing, as direct engagement with policy-makers can be a slow process. On the other hand, these methods, for example reference groups, are uncertain and informal ways of influencing, and the discussions do not end up in formal protocols or in the public diary.

External Impact

The Thurston et al.:s framework emphasizes the impact on public health as an important external impact, but many respondents do not see it as their responsibility to contribute to improving the health of the older population. However, the pandemic has brought attention to the issue of isolation among older people, prompting discussions within the PCs about the role that pensioner organizations and regional politicians can play in addressing it. These discussions have primarily focused on the social activities organized by pensioner organizations, such as training, walks, and social events, as a means of preventing isolation. While interest politics has not been the primary focus of these discussions, they demonstrate the potential for PCs to address important public health issues through their engagement with pensioner organizations.

Overall, the perception of how the PCs can have an impact outside of the healthcare organization and region appears to be quite limited. The way in which PC respondents perceive their impact on society and citizens is primarily through the dissemination of information they receive during PC meetings. However, there appears to be no active intention to educate the broader public due to perceived resource demands. Instead, representatives focus on providing feedback to their own organizations, with many acknowledging the need for improvement in this feedback loop. Some respondents adopt a pragmatic approach, recognizing that not everyone in their organizations is interested in listening or contributing ideas. There is a general belief that representation mechanisms are crucial to pensioner organizations, suggesting that the most significant external impact for them is to contribute to democratic values such as well-functioning representation, transparency, and accountability. The meeting protocols and PowerPoints presented are publicly available online, which is seen as an easy and practical way of creating transparency and enabling both members of the pensioner organizations and citizens in general to access this information.

Among politicians, there seems to be a difference in perception regarding the role of the representatives in spreading the information they receive. Some consider it a central purpose of the councils, while others emphasize that the purpose of the council should be to promote dialogue since information can be disseminated in many other ways.