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The third question concerns the dynamics between representatives and professionals while appraising quality of care and research. The studies of this thesis show that people with chronic illness or disability can be involved in the appraisal of research and quality of care from several roles. What our studies show is that representatives often function in an advisory role in a committee or health debate. In the role of advisor one is present and included, but this is not to say that one is heard and taken seriously. Quite often the advisor is the only person with a chronic illness or disability in a group with professionals.

Over the last years this is changing. The example below illustrates this gradual change in the involvement practice in a charity fund. It concerns a summary of the seven-year longitudinal case study (2005-2012) on the involvement of people with a lung disease in research funding approval is presented (Chapter 6).

Example: patient involvement in appraising health research

Over seven years, the criterion for approval and funding changed. These criteria developed from scientific quality, being used as the only key criterion, towards the implementation of both scientific relevance and societal relevance as equally important additional criteria. The latter two are being used since 2010.

Chronic lung patients did not have a group of patient representatives who were capable of introducing their interests on a national and international level before 2005. In 2005 the scientific advisory committee (WAC) effectively included one patient member. Between 2005 and 2009 two lung patients participated in the WAC, based on their personal capacity. These two persons were assigned members of a newly established group of lung patients with experiential knowledge as well.

This was a key change in the process. The group represented lung patients on an

(inter) national level, and was being facilitated by an LFN staff professional from 2010. In 2010 the two patient WAC members had difficulties to consult with the chronic lung patients in the country and getting some more support. By 2011 three lung patients participated in the WAC as equal partners.

At first, it lacked commitment of professionals to patient involvement, both inside and outside the LFN up to 2009. The patient involvement in the research cycle was further intensified every year, based on experience and discussions with the patient members in the scientific advisory committee. By 2012 patient

involvement was widely accepted in the LFN organization and it was mentioned in the LFN strategy, in the research policy and in the annual budget allocation for training and information exchange.

Representatives of people with chronic illness or disability can be advisors and they may also act as an equal partner or have control over processes in care and research. The role primarily indicates the status of the information or activity provided by the representative.

This determines the crucial difference between being present and included and having a right to say and influence. Involvement roles match with Arnsteins’ ladder of citizens participation (Arnstein, 1969). These roles are shown in figure 3. Higher steps on the ladder indicate a higher level of involvement.

Figure 3 Involvement roles of people with a chronic illness or disability

Chapter 2 of this thesis describes how Truus, the author, acted herself as advisor and partner. The thesis itself is a manifestation of the principal/control role.

© G.J.Teunissen 2009


The organisation of people with a chronic illness or disability is the principal and has full control of content


People with a chronic illness or disability cooperate as equal partners with other parties and take decisions jointly


People with a chronic illness or disability offer advice when asked but take no group decisions Consultation

People with a chronic illness or disability are asked for their opinion

No participation

People with a chronic illness or disability do not ask and are not asked

Situated and relational roles

Our studies show- see chapter 5 and 6.1 - contrary to the Arnstein model people with chronic illness or disability representatives not merely aim for the highest level of

involvement (control), but consider what level is the best, the most effective and the most feasible to achieve their goal. This also depends on the individual person’s history, identity and situation. Many representatives indicate that conditions for involvement like support, financial compensation, and having a replacement available are often not met, thus limiting their involvement (Kool, 2013; Dedding & Slager, 2013). No need to say that without proper conditions for involvement and experiences of being treated as an – in Dutch – “excuse Truus” the motivation to be involved will decrease.

While Arnstein’s model is static, in practice people with a chronic illness or disability experience a dynamic process of trial-and-error finding out what fits their ambitions and dreams when it comes to involvement. Chapter 2 of this thesis highlights that

representatives may have been exposed to a difficult and emotional individual process of coping with mourning, loss, acceptance and finally awareness and growth after becoming a person with a chronic illness or disability, a ‘patient’ or a ‘client’. Being confronted with and living with a chronic illness or disability sometimes involves periods of anxiety and self-centeredness alternating with periods of strength and acting on behalf their groups Hence, people who function in their role as representatives, are both strong and articulated as well as vulnerable and dependent. This finding places the notion of the robust, resolute and articulate person with a chronic illness or a disability, being in control and doing self-management in perspective.

Chapter 2 demonstrates this concept is flawed, since people with chronic illness or

disability are not all able to live up to this ‘sturdy’ image all the time for reasons like having a mental illness, being fully occupied with survival or coping with a disease, being in the early phases of a mourning process, being part of an ethnic or cultural minority group or having poor literacy skills. When actively involved in quality of care and research activities, they face difficulties with keeping up the continuity of their activities due to uncertainties associated with their chronic illness or disability and improper conditions for involvement, such as the lack of fresh air when having a lung disease or lack of assistance to go to the toilet when wheelchair bound ( Kool, 2013).In addition, it is hard to appraise research proposals from their perspective because existing research forms and protocols practice a language that is often unfamiliar to them and not matching up with their experiences (Chapter 5).

To bridge this gap between the daily muddiness of their situation and high notions of involvement, representatives of people with a chronic illness or disability attempt to act according to the dominant thinking, model and discourse. They experience feelings of shame and guilt as they are neither meeting the high demands nor want to be excluded from involvement at the same time.

Proper conditions need to be created to prevent this dysfunctional relational dynamic.

Inclusion strategies include good circumstances, (the setting), behavior (i.e. the opportunity to speak) and verbal communication (lay terminology) (Elberse, 2012) and mutual

support and relational empowerment (Baur, 2012; Schipper, 2012).Our study indicates that one of the most important factors is ‘support’. In order to contribute in involvement practices, people need support to properly fulfill their roles. Fulfilling their roles is never a solitary activity, but a relational activity (Chapter 6.2 ). Ideally, people with a chronic illness who act as representatives, function in the context of a partnership with researchers, policymakers or any other person who is involved in the appraisal practice.

Example: patient involvement in agenda setting

Another example of how a partnership emerged between people with a chronic illness or disability and professionals when appraising quality of care and research, concerns a partnership in research agenda setting. Chapter 6 describes, in 2004, the lung foundation invited experts ánd people with asthma and/or COPD in developing a shared research agenda. In 2009, the LFN research agenda was updated and extended including rare lung diseases. Again, patients and experts were actively involved as partners. This resulted in two new societal lung research agendas. The approach for updating and extending research priorities proved useful for eliciting research priorities from patients and experts. Although research priorities of patients and experts are largely comparable, they differ in details and patients prioritized research topics in chronic lung diseases that were previously not included in the research focus in The Netherlands, such as fatigue and comorbidity.

Conditions: Support and communicative space

There are some risks that involvement in health research and quality of care becomes too instrumental by using the appraisal and evaluation criteria that this study developed (Chapter 3). Professionals might use the criteria as a tool or a checklist and consider involvement to be ready as soon as the questions are asked or the boxes are ticked. True involvement consists of more than ticking boxes, it requires genuine cooperation, sincere dialogue and partnership (Elberse et al,2010; Baur, 2012; Schipper,2012).

Moreover, this thesis and other studies show it requires space for people with chronic illness or disability to express their concerns, vulnerabilities and negative experiences with research and care (Todres et al, 2007; Visse, 2012). Too often, there is no space for these parts of experiential knowledge. The communication style of people with a chronic illness or disability not always matches with the scientific and professional discourse, and can easily be dismissed as being anecdotal and thus not credible and relevant.

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