Patients’ Knowledge Sharing In An Online Health Community: A Case Study
Jimmy van der Valk (s1706667) University of Groningen
2017
Masterthesis Business Administration: Change Management Faculty of Economics and Business
Abstract
Since the rise of web 2.0 tools, where both creators and users can contribute to the content, patients use the internet more and more to form online health communities (OHC’s). For patients, a large motivator to join such a community with patients that suffer similar conditions is to share knowledge and experiences. The current thesis answers multiple research calls by focusing on underlying processes in patient’s knowledge sharing in OHC’s. To investigate these processes, a 3,5 year content analysis of an OHC on Facebook is
performed, and 7 interviews with members of the OHC are conducted for extra illustration. Members of the OHC are all patients with an acquired brain condition. Four different processes of knowledge sharing were found. The first is using the Facebook-group as a platform to share external health-related knowledge sources; the second is sharing knowledge through sharing patient-related experience; the third is sharing knowledge through modeling; and the fourth is sharing knowledge through similarities and recognition. These processes are compared with existing literature on online knowledge sharing and differences are discussed. To conclude, limitations, suggestions for further research, theoretical implications and practical implications are explored.
from 42% in 2000 to 75% in 2012 (Brabers, Reitsma-van Rooijen & de Jong, 2012).
Combining people’s apparent motivation to search for online health-related knowledge with their tendency to connect with people that have the same interest, has resulted in the
emergence of online health communities (OHC’s) (Greenberg, D'Andrea & Lorence, 2004). OHC’s are online communities where people with similar conditions can share information and experiences (Johnston, Worrell, Di Gangi & Wasko, 2013). They are based on Web 2.0 principles, which entail that both creators and users can contribute to the content. Therefore all members of the group could potentially share knowledge with the community (Kaplan & Haenlein, 2010; Faraj, Jarvenpaa & Majchrzak, 2011). In the current thesis, the focus will be on patients’ knowledge sharing in online health communities (OHC’s). Knowledge sharing is defined as the process where knowledge is given by one individual or group and received by another individual or group (Sharratt & Usoro, 2003).
Previous research on online communities (OC’s) in general is predominantly focused on two areas: (1) on why people would contribute and be part of such a community, while they do not know the other participating persons and gain no direct benefit from contributing their information (Wasko & Faraj, 2005; Paroutis & Al Saleh, 2009); and (2) on the social characteristics of these communities (Jarvenpaa & Majchrzak, 2010; Zhou, 2011; Faraj, Kudaravalli & Wasko, 2015).
Previous research on OHC’s in specific pertains: (1) the social characteristics of the OHC (Maloney-Krichmar & Preece, 2002; Maloney-Krichmar & Preece, 2005) and (2) on the benefits and drawbacks of OHC’s for patients (Thielst; 2011; Roblin, 2011; Greene,
However, less is known about the underlying processes of how patients share
knowledge in OHC’s. There are several calls in the literature to investigate these underlying processes. Faraj, Jarvenpaa and Majchrzak (2011) state that, to fully understand OC’s, there should be an expansion of scientific knowledge on underlying processes and dynamics of knowledge sharing. Househ, Borycki and Kushniruk (2014) recognize a lack of this research in OHC’s specifically. Furthermore, in a special issue introduction, Faraj, von Krogh, Lakhani and Monteiro (2016) call for more research about the underlying processes of knowledge sharing in OHC’s. They argue that this is important because the sharing of knowledge might be the factor that creates value for members of OHC’s. Therefore, the following research-question will guide this research:
How do patients share knowledge in online health communities?
To answer this research question, a case study will be performed on an OHC on Facebook. The case study will predominantly consist of a content analysis of the Facebook-group. For extra illustration, interviews with patients of the Facebook-group are also conducted.
This thesis will contribute to the literature by answering to multiple research calls for more in-depth insights in the processes of online knowledge collaboration in OC’s and OHC’s (Faraj, Jarvenpaa & Majchrzak, 2011; Househ, Borycki & Kushniruk, 2014; Faraj, von
how healthcare providers can potentially adopt OHC’s in their own practice (Lober & Flowers, 2011). This could especially be useful when patients do not receive enough information through standard channels (Faraj, Jarvenpaa & Majchrzak, 2011), which is the case in some patient-groups (van der Eijk et al., 2013). Furthermore, patients knowledge sharing through OHC’s can have various positive and negative effects on healthcare providers. It could lead to more equal communication between the patient and healthcare professional, or lead to suboptimal interaction between the patient and healthcare
professionals and increase switching of doctors (Smailhodzic, Hooijsma, Boonstra & Langley, 2016). Gaining deeper insight in how patients share knowledge, could help healthcare providers guide the knowledge sharing behavior of the patients and potentially diminish the negative effects and enhance the positive effects.
In the next section, a literature review will provided. First, previous research about online communities and online health communities will be discussed. Regarding online knowledge sharing, most previous research is about web 2.0 applications in general. Therefore, an overview about knowledge sharing and knowledge sharing in web 2.0 applications will be given subsequently.
Online communities
Online Communities (OC) are defined as any virtual social space where people come together to give and receive information or support, to learn, or to find company (Preece, 2001). Online communities can be an aid in both personal and collective knowledge
OC’s as OC’s “where boundaries, norms, participants, artifacts, interactions, and foci continually change over time”.
Despite the fact that social relationships and rules are less clear in online communities than offline communities, group norms and identity do play a role. People tend to contribute more knowledge to the online community when their own norms are similar to the norms of the group and when they can identify more with the online community (Zhou, 2011; Bagozzi & Dholakia, 2006). Also group-leaders tend to develop in online communities. People that have a relative high contribution to the group, are sociable and have a large network
themselves are mostly seen as leaders of the community and are important in creating group norms and group identity (Faraj, Kudaravalli & Wasko, 2015). Furthermore, people tend to contribute knowledge to online communities when they perceive that it enhances their professional reputation, when they are structurally embedded in the network, when they have the experience to share (Wasko & Faraj, 2005) and out of prosocial behavior (Nambisan & Baron, 2010). On the other hand, if people perceive the interaction in the group as not to be trusted, deceiving and/or novel, they will contribute less knowledge (Jarvenpaa & Majchrzak, 2010). Thus, OC’s can be an aid in knowledge sharing, but there are a variety of factors that determine whether people will actually contribute or not.
Online health communities
OHC’s are a specific kind of Online Community. In OHC’s, people with similar medical conditions share information and experiences (Johnston et al., 2013). Regarding OHC’s in specific, one large individual motivator for patients to use the community is to look for relevant health related knowledge (Colineau & Paris, 2010).
OHC´s for patients: (1) information and knowledge sharing; (2) the possibility of community building; (3) more efficient ways of communication between patient and healthcare providers; (4) an increase in emotional support; (5) an increased sense of autonomy and empowerment; and (6) an increased sense of self-efficacy to deal with the condition. Possible drawbacks of OHC´s are privacy concerns and misinformation. In the next section, an overview about knowledge sharing and knowledge sharing in web 2.0 applications will be provided.
Knowledge sharing
Whilst knowledge and information are two terms that are often used interchangeably, they are not the same. Information can be seen as raw data, and knowledge can be seen as the interpretation of this data by the beholder, based on commitment and beliefs (Nonaka, 1994).
Knowledge can be divided into explicit knowledge and tacit knowledge, where explicit knowledge can be shared easily by formal language and is reproducible by the conscious mind, and tacit knowledge is knowledge that is more ingrained in a person´s unconsciousness and perception of the world and is therefore difficult to express (Polanyi, 1966). An example of explicit knowledge is the knowledge that a patient might have about the availability of a certain medicine. This knowledge can easily be transferred to the OHC by just typing the knowledge there. An example of tacit knowledge can be how a patient has found a way to live with the disease. This might have been a process of years, much more difficult to explain and more ingrained in the mental schemes and unconscious of the patient. Hence, it is more difficult to share this knowledge in the OHC.
new explicit knowledge by levering existing explicit knowledge. In externalization, tacit knowledge is being transferred to new explicit knowledge. Internalization refers to the internalization process of explicit knowledge to tacit knowledge.
Knowledge sharing in web 2.0 applications
Wagner, Vollmar and Wagner (2014) combined the four mechanisms of knowledge sharing of Nonaka (1994) with thirteen possible affordances of web 2.0 applications. For an overview of the thirteen affordances of web 2.0 applications, refer to table 1. Per mechanism, Table 1
An overview of web 2.0 application affordances (Wagner, Vollmar and Wagner, 2014)
Affordance Description Source
Reviewability Reviewability Visibility Persistance Scalability Searchability Recombinability Recombinability Replicability Experimentation Editability Association Association Tagging Links Authoring
Viewing and managing the content of front and back narratives over time; reviewing a range of ideas; reviewing the full range of contributions from a single individual
Ability to make behaviors, knowledge, preferences, and communication network connections visible
Communication remains accessible in the same form as the original display after the actor has finished his or her presentation; expressions are automatically recorded and archived
Visibility is great
Content can be accessed through search
Borrowing of and building on each other’s contributions Content can be duplicated
Try out novel ideas
Ability to craft and re-craft a communicative act before it is viewed by others; ability of an individual to modify or revise content they have already communicated
Established connections between individuals, between individuals and content, or between an actor and a presentation; enable users to make visible their social networks
Ability to categorize content by attaching simple, one-word descriptions
Ability to provide a connection from one web page to another, citations take the form of links
Generating content and putting it online for a broad audience; authoring can take many forms (an insight, a fact, an experience, a link, an edit) and include various types of media (written status updates, photos, videos, etc.)
they found two affordances of web 2.0 tools that could enhance that specific form of knowledge sharing online (table 2). According to Wagner, Vollmar and Wagner (2014), all four mechanisms of Nonaka (1994) could be enhanced by web 2.0 tools and affordances. Table 2
Social media affordances which support the various SECI processes ((Wagner, Vollmar and Wagner, 2014)
Tacit knowledge Explicit knowledge
Tacit knowledge Explicit knowledge Socialization Association Reviewability Internalization Reviewability Experimantation Externalization Authoring Editability Combination Editability Recombinability
However, it is important to note that Nonaka, Umemoto and Senoo (1996) saw fruition for IT in externalization, combination and internalization, but not so much in socialization.
Next to providing affordances for knowledge sharing, Web 2.0 changed the way knowledge is shared in organizations and communities. Traditionally, organizations and communities used the expertise of a few experts as their primary source of knowledge. This model of knowledge management is called the expertise model (Majchrzak, Wagner & Yates, 2013). According to Majchrzak, Wagner and Yates (2013), the use of the traditional expertise model has its challenges, namely the bottleneck of expertise (Wagner, 2008), lack of incentive to share (O'dell & Grayson, 1998), contextuality of knowledge (Feigenbaum, 1992) and the maintenance trap (Brooks, 1995). For a clear explanation per challenge, refer to table 3.
Challenges of the expertise model (Majchrzak, Wagner & Yates, 2013)
Bottleneck Description Source
Few experts, many tasks (bottleneck of expertise) Lack of incentive to share Contextuality of knowledge Maintenance trap
The more specialized the expertise, the more limited the supply. This leaves the limited supply of experts in great demand, resulting in either not having the time to share expertise, insufficiently sharing expertise, or becoming a delaying factor in the compilation of knowledge
Despite any organizational rhetoric, experts will be able to assess whether the organization’s reward system rewards sharing. If not sufficiently rewarded, which too often is the case, the expert’s only rational behavior is to maintain personal expertise and thus not share
In addition to the important dimensions of knowledge depth and breadth, knowledge use beyond narrow and well-structured tasks requires contextuality and knowledge variety so as to avoid narrowness and brittleness. If a specific set of rules does not work, experts are able to modify knowledge they use to the unique characteristics of the situation, or alternatively use other knowledge. To capture an expert’s knowledge in all its variety and contextuality is a formidable task, usually foregone in favor of either standard solutions (of value mainly for novices), or niche solutions for high impact special situations.
Even if knowledge can be captured, its organizational reuse requires maintenance as new situations, distinctions and contra-indicative knowledge emerge. Consequently, increased knowledge capture can lead to so much increased maintenance that experts would only have time to maintain previously shared knowledge rather than create or share new knowledge
Wagner (2008) O’Dell & Grayson (1998) Feigenbaum (1992) Brooks (1995)
model, knowledge is created and exchanged through dialogue (Majchrzak, Wagner & Yates, 2013). Using this model, two of the challenges of the expertise model, can be overcome (Wagner & Bolloju, 2004): (1) an organization can overcome the bottleneck of expertise challenge because there are many contributors that make small contributions in web 2.0 applications; and (2) the challenge of a lack of incentive to share can be overcome, because people’s contributions are small and only a small part of the work process, Therefore, it is less time-consuming and less effortful to share, so people will be more inclined to do so.
2009, pp. 18) “consists in a collection of processes that an individual needs to carry out in order to gather, classify, store, search, and retrieve knowledge in his/her daily activities”. Collective knowledge management (CKM) is knowledge that is common to the whole community. The role of online communities in collective knowledge management, lies predominantly in sharing knowledge and opinions with others (Kirchner, Razmerita & Nabeth, 2009). Avery, Brooks, Brown, Dorsey and O’Conner (2001) identified seven PKM skills (table 4). Three of them, namely evaluating information, collaborating around
information and analyzing information are supported by online communities (Kirchner, Razmerita & Nabeth, 2009) and happen during collective knowledge sharing in online communities.
Table 4
Seven personal knowledge management skills (Avery et al. (2001)
Retrieving (searching and identification)
Evaluating (assessing the quality and relevance of information) Organizing information
Collaborating around information
Analyzing and making sense of information Presenting information
Securing information (or memorizing information)
To summarize, web 2.0 tools enhance knowledge sharing by providing knowledge sharing affordances, overcoming some knowledge sharing challenges of the traditional expert knowledge model and by combining personal and collective knowledge management.
The goal of this study is to gain a deeper understanding of the underlying processes of patients’ knowledge sharing in online health communities. To answer this research question, an explanatory qualitative case analysis is adopted. An explanatory qualitative case analysis is appropriate, because explanatory case studies are aimed at finding underlying workings, especially in complex social phenomena in real-life context (Yin, 2013), such as knowledge sharing in OHC’s.
Site selection
An online health community on Facebook for patients with an acquired brain
condition is chosen for this research. This specific group of people is chosen, because they are likely to be highly motivated to use the OHC for knowledge sharing. There are three reasons for this: (1) healthcare providers often are not up-to-date with the knowledge in this field (van der Eijk et al., 2013), so patients might need to seek knowledge themselves; (2) the impact of the condition on patients daily lives and the decisions they have to make to cope with their condition are high, all-round and versatile (Eriksson, Tham & Borg, 2006). Hence, there will be much to learn from each other; and (3) most of these patients are somewhat isolated from other patients with similar conditions (Fourie & Julien, 2014), so the internet might be the easiest or only option to share knowledge with other patients.
Data collection
Background information about the interviewed patients
P1 Patient 1 is a 44 year old male, and has suffered two consecutive cerebral artery strokes when he was 36 years old. He has completed formal rehabilitation. He had to learn to write and read from scratch again, has concentration problems and cannot tolerate much stimuli. He joined the Facebook-group several years ago, reads everything in the group, but posts relatively little. He has positive experiences with the healthcare system. P2 Patient 2 is a 36 year old female, and has suffered a cerebral infarct and a hemorrhage
when she was 18 years old. She has completed formal rehabilitation. She is one handed and has difficulties walking. Another consequence she experiences is fatigue. She joined the Facebook-group some years ago, doesn’t actively go to the group very often, but , reads everything in the group. She has negative experiences with the healthcare system. P3 Patient 3 is a retired female. Her brain injury has caused her left side of the body to be
spastic. She has completed formal rehabilitation. She experiences diminished energy throughout the day. She joined the Facebook-group some years ago out of curiosity, reads everything on the page, doesn’t post often herself and only comments when she is knowledgeable on the subject. She worked in healthcare herself, but has had negative experiences with the healthcare system as a patient.
P4 Patient 4 is a 40 year old female, and when she was 5 years of age, she had a collision with a surfboard. This accident resulted in the removal of a tiny part of her brain. She has completed formal rehabilitation. She was able to learn everything again. Physically, her left body parts are slower than her right body parts. Also, her concentration diminishes fast during the day and her energy is quite low. Furthermore, complex information processing is difficult for her. She joined the Facebook-group 6 months ago, but she didn’t perceive any benefits of the group yet. She wants to use it predominantly to meet with similar people offline. Since she was only 5 years old when the accident happened, she doesn’t remember the quality of healthcare at the time very well.
P5 Patient 5 is a male and suffered from a stroke eighteen years ago. He has completed formal rehabilitation. Consequences of the condition are a reduction of energy and difficulty with speaking. He joined the Facebook-group 4 years ago, and is an active member. He posts something every week. He has positive experiences with the healthcare system.
P6 Patient 6 is a male and suffered from stroke 7 years ago. He completed formal rehabilitation. His whole right part of the brain is not working very well anymore. He defied statistics and can now do things that the rehabilitation doctors had never thought would be possible. He joined the Facebook-group to find information and similar people, who are – just like him - angry with the healthcare system and want to change it. But until now, he hasn’t found similar people.
P7 Patient 7 is a female and suffered from stroke 6 years ago. She has difficulties with concentration and energy. She received a misdiagnosis and it took her time and initiative to get the right diagnosis and treatment. Therefore, she is negative about certain parts of the healthcare system. She completed formal rehabilitation. She joined the Facebook-group 4 years ago and uses it predominantly to post her own blogs about coping with a brain condition. She is also working on multiple projects to support people with brain injury.
The language used in all interviews was Dutch. The length of the interviews varied from 24 to 71 minutes, with an average of 44 minutes. All the interviews were recorded with permission of the participants.
The interviews were part of broader research. Therefore the interview questions were divided in multiple related topics. The questions were related to patients’ use of the OHC; patients’ knowledge sharing in the OHC; the influence of patients’ use of the OHC on their doctor-patient relationship; the influence of patients’ use of the OHC on quality of life and health-outcomes; and general benefits and disadvantages of the OHC. The full interview protocol is presented in appendix 1.
Data analysis
Sharing problems and frustrations regarding condition (based on 59 codes) Sharing knowledge through role‐modelling (based on 223 codes) Sharing knowledge through modeling (based on 4 different codes) Sharing knowledge with similar persons (based on 93 codes) Sharing knowledge when recognizing the issue (341 codes) Sharing knowledge based on homophily (based on 5 different codes) Findings
Four different processes of knowledge sharing were found in the Facebook-group. The first is using the Facebook-group as a platform to share external health-related knowledge sources; the second is sharing knowledge through sharing patient-related experience; the third is sharing knowledge through modeling; and the fourth is sharing knowledge through
similarities and recognition. An extensive explanation per theme is provided.
Using the OHC as a platform to share external health-related knowledge sources
Categories and sub-categories of sharing external health-related knowledge sources in OHC
online patient‐groups (18x) Reference to other online‐patient group with a specific goal (4x) Sharing knowledge from one ohc to another ohc (2x) Sharing knowledge about offline patient‐groups (6x) Reference to an offline group (5x) Sharing knowledge gained in an offline patient group in OHC (1x) Sharing knowledge about informational books (5x) Reference to book about personal experience with nah (4x) Reference to informative book about nah (1x)
Sharing knowledge through blogs and articles. In the Facebook-group, links to a
variety of blogs and articles are posted. About 2/3 of all the posted blogs and articles are about patients stories, experiences and tips for other patients. Since personal stories and experiences are ingrained in a person’s unconsciousness and perception of the world, it is predominantly tacit knowledge that is being transferred to tacit knowledge in a socialization process (Nonaka, 1994). However, some blogs/articles transfer this tacit knowledge in concepts or explicit tips, thereby transferring it to explicit knowledge in a externalization process (Nonaka, 1994).
Generally, a link is shared with a short summary of the blog. For example: “From one moment to the next, Lizanne was disabled. Read how she climbed up from her lowest point to great altitude.” Some of the blogs/articles invite other patients to share their opinion about the blog: “I have to admit: asking for help is not my thing. In my blog I show my most vulnerable self. Is there anything you should be asking help for, but you are too stubborn?” Typically, other patients then react with their own opinion or experience.
researched it and it will be shared [in an article]. So in this way, the network is very practical.” So, blogs and articles about a variety of topics are used to make personal knowledge accessible to all patients in the Facebook-group.
Sharing knowledge from informative websites, informative films and informative books. In the Facebook-group there are 70 links to informative websites, 34 links to
informative films and 5 links to books. They vary in topic (table 7). Interesting is that informative films and books are predominantly used to share tacit knowledge, like personal stories and experiences and informative websites are predominantly used for more explicit knowledge sharing like information about tools, treatments and apps.
Sharing knowledge from offline social events. From time to time, links and
information is shared about offline social events. They consist of sport-events, social events with members of the Facebook-group and public social events (table 7). Although the offline social events are organized for social reasons and sport, health related topics are also
discussed and knowledge is shared.
One example of this is the sharing of knowledge about a certain treatment called the Veldenkreis-methode. P3. came in contact with this method in an offline social event: “because a friend of mine said that. Have you ever thought about Veldenkreis.” During the event, knowledge about the method was shared, and now, when someone else in the
Sharing knowledge from offline professional events. Links to offline professional events are predominantly about informative lectures. Also calls to join research and calls to become a professional experience expert are shared. And one reference to a political debate is shared (table 7).
Lectures can provide both patients and people nearby the patients with information about the condition and rehabilitation: “I just read that the brain foundation also gives lectures for companies and organizations. Maybe convenient for people who experience incomprehension at work. Maybe you already knew this, but better safe than sorry.”
Where lectures can provide specific information, joining research can be promising in gaining up-to-date knowledge for the patients, as the following Facebook-post illustrates: “The university of Amsterdam investigates the possibilities of recovery of the brain after, among other things, a stroke. The research consists of training the brain five days per week for thirty minutes with a computer, over a period of twelve weeks… the idea is that by training the brain more recovery is possible.”.
Sharing knowledge from online patient-groups. Mostly, patients are not confined to
one online community, they use multiple. In the Facebook-group, there are references to other general online patient-groups and references to online patient-groups with a specific goal ( table 7).
knowledge takes place between one online patient-group and another.
Another example of a patient-group with a specific goal is “klankbordgroep
hersenletsel Groningen-Drenthe”. A link is shared in the Facebook-group and the goal of the group is to inform people regarding a new law: “With effect from 2015 a new WMO law is enforced. This means there will be some changes… There are, and will be, interviews to clarify the request for aid… If you will get such an interview, it is important to go into it with a proper preparation. To help you with this… […] ”. This is an example of how knowledge from one online patient-group is shared in the current Facebook-group.
Sharing knowledge from offline patient-groups. Within the Facebook-group,
some references are made to offline patient-groups (table 7). Similar to online patient-groups, knowledge is transferred from offline patient-groups to the Facebook-group. One patient (P2) gained knowledge related to an alternative medicine against epilepsy in an offline patient group and then shared it with the whole Facebook-group: “Via the focus group I got talking to someone, and because of that I have different medication now. I benefited so much from it… and now more people [from the facebook group] use CBD-oil because of me.” Thus,
knowledge that has been gained in a smaller offline group, is shared with a much larger online group.
Intuitively, sharing knowledge through other groups (offline social events, offline professional events, offline patient-groups and online patient-groups) can be tacit or explicit, depending on what is being discussed. However, primarily explicit knowledge sharing to explicit knowledge was found (e.g. the effects of a new law, the existence of a specific medicine, the workings of medicinal cannabis), relating to combination (Nonaka, 1994).
spoken channels; and professional vs. non-professional channels. Patients use the OHC to find these channels, and also to share knowledge that they have gained through those channels. In terms of affordances (Wagner, Vollmar & Wagner, 2014), “links” is the affordance where through the community can function as a platform of external knowledge sources.
Furthermore, characteristics of the conversational model (Majchrzak, Wagner & Yates, 2013) can be observed. Only a small part of the shared external knowledge is knowledge from professionals. The largest part of the external knowledge sources are small personal contributions of many contributors (patients).
In terms of the knowledge sharing mechanisms of Nonaka (1994), it became clear that three of the mechanisms were present, namely socialization, externalization and combination. Because of the personal characteristics of the blogs/articles, the mechanism of socialization was predominantly present. Sometimes these blogs/articles translate tacit knowledge to concepts and tips, which accounts for the externalization mechanism. And in sharing knowledge through other groups (offline social events, offline professional events, offline patient-groups and online patient-groups) explicit knowledge was mostly transferred to explicit knowledge, which explains the combination mechanism. The internalization mechanism was not found.
Sharing knowledge through sharing patient-experience
In the previous section it became clear how external knowledge sources are brought together in the Facebook-group. In this section, knowledge sharing through sharing of patient-experiences will be covered
line with the role of online communities in collective knowledge management, which is the sharing of knowledge with others (Kirchner, Razmerita & Nabeth, 2009).
The content analysis rendered three topics that patients use to share their experiences. These are sharing experiences related to coping with the condition, sharing experiences related to medicine and treatment and sharing experiences related to institutions (table 8 for an overview about the categories and sub-categories).
Category (times coded) Sub-category (times coded)
Sharing experiences related to coping with the condition (1010x)
Asking directly for patient‐experience about coping with NAH personally (41x) Asking directly for patient‐experience about a family member/closely related person with NAH regarding coping with the condition (1x) Asking for advice regarding coping with NAH (66x) Asking advice regarding coping with NAH for a family member/closely related person regarding coping with the condition (1x) Providing direct patient‐experience about coping with NAH personally (485x) Providing direct patient‐experience about a family member/closely related person with NAH regarding coping with the condition (5x) Providing advice based on patient‐experience on NAH regarding coping with the condition (160x) NAH‐related discussion based on patient‐experience regarding coping with the condition (235x) Gaining useful knowledge about coping with condition, based on experiences others (16x) Sharing experiences related to medicine and treatment (422 x) Asking directly for patient‐experience about medicine and treatment NAH (12x) Asking for advice regarding medicine and treatment NAH (18x) Asking advice regarding medicine and treatment for a family member/closely related person (1x) Providing direct patient‐experience about medicine and treatment personally (83x) Providing direct patient‐experience about a family member/closely related person with NAH about medicine and treatment (3x) Providing advice based on patient‐experience on medicine and treatment (50x) NAH medicine and treatment ‐related discussion based on patient‐experience (245x) Gaining useful knowledge about medicine and treatment, based on experiences others (10x)
Sharing experiences related to institutions (242x) Providing direct patient‐experience about coping with NAH about condition‐ related institutions (74x) Providing advice based on patient‐experience on NAH regarding condition related institutions (12x) NAH‐related discussion based on patient‐experience regarding condition related institutions (142x) Gaining useful knowledge about condition‐related institutions, based on experiences others (2x)
Sharing experiences related to coping with the condition. Learning to cope with the
consequences of a brain condition is often a life-long process (P7.): “You don’t go to the revalidation clinic anymore, you have exhausted all treatment options. And then you are home. And then you have to deal with it, that it will never be like it used to be… and that is what they call the chronical phase, in professional language.” In this life-long process, patients find it often very helpful to share their experiences and ask others for their
experiences (P1.): “But you have to reinvent life yourself. And at a certain point you don’t know what to do anymore. For instance, I encounter exhaustion all the time, but in the Facebook group it is easy to say: I have this problem, how do you cope with that? And in most cases people respond to it. And oh, they cope with it in a very different way.”
In the Facebook-group, there are 485 posts/comment in which patients personal experiences about coping with the condition are directly provided. In an extra 160
posts/comments, advice about coping with the condition is given based on patients personal experiences. The process of sharing experiences can begin with asking for advice or asking for direct experience, but this is not necessary. Often, the sharing of experiences about coping with the condition leads to a discussion about the topic, based on personal experience (table 8). To sum up, learning to cope with the condition is a life-long process, patients learn from each other’s experiences, and this is facilitated by asking for advice/experiences and
shared. This can be seen as a transfer of tacit knowledge to other tacit knowledge in a socialization process (Nonaka, 1994). Furthermore, through dialogue or collective reflection like discussions, the tacit knowledge can become explicit knowledge by creating explicit concepts and tips (Nonaka, 1994).
Sharing experiences related to medicine and treatment. According to the patients,
knowledge-sharing through experience about medicine and treatment is necessary because the doctor doesn’t provide them with all the necessary knowledge: “that you have to go after all medicines and new developments yourself, and that you have to present your own findings to neurologists. Because they just don’t engage in thinking of possible solutions.”
In the Facebook-group, there are 83 posts/comments in which patients personal experiences about medicine and treatment are provided. In an extra 50 posts/comments, advice about coping with the condition is given based on patients personal experiences. The process of sharing experiences, can begin with asking for advice or asking for direct
experience, but this is not necessary. Similar to sharing experiences about coping with the condition, sometimes the sharing of experiences lead to discussions on what medicine or treatment works best (table 8).
P7. described how a discussion about a particular cholesterol medicine, lead to better knowledge of medicines: “And via the Facebook page people gain knowledge about the existence of other cholesterol lowering medication [then they are using now] and a couple of weeks later you read a comment like: Oh, thanks, I took it to my general practitioner, he prescribed it and it’s working. Then I think, well, if she wouldn’t have shared this on the Facebook page…”
comments: “does someone have experience with the so called splat surgery? (in which the muscles that lift your feet are split, in order to enable you to lift your whole foot more
easily?)”. Multiple reactions followed, and one comment illustrated how shared knowledge is used to make a decision: “partially because of your experiences I decided to have this surgery done! I have had nice consults with Dr. Verschuur in the MCL. I have a lot of faith in this treatment.”
So, patients have the perception that doctors are not up to date with all the medicines and treatments. This motivates them to share experiences with certain medicines and treatments, and they use this knowledge to make decisions to use certain
medicines/treatment or not. Knowledge sharing regarding medicines are for a large part based on experiences. This can be seen as a transfer of tacit knowledge to other tacit knowledge in a socialization process (Nonaka, 1994). Furthermore, through dialogue or collective reflection like discussions, the tacit knowledge can become explicit knowledge by creating explicit concepts and tips (Nonaka, 1994).
Sharing experiences related to institutions. Mostly, experiences related to institutions are
quite negative, and people would like to know whether they have been treated right or not. In the Facebook-group, there are 74 posts/comment in which patients personal experiences about institutions are provided. In an extra 12 posts/comments, advice about institution is given based on patients personal experiences. The process of sharing experiences, can begin with asking for advice, but this is not necessary. Similar to other categories of sharing experiences, sometimes the sharing of experiences leads to discussions about the institutions (table 8).
scooter in the garage and a woman is limited in her freedom!!!” An example of a comment where another patients shares his/her experiences is: “I recently got a new battery after I declared that my mobility scooter let me down more and more often… So maybe it’s also depending on the municipality that you live in…” And “I think the municipality has a maintenance obligation. She probably also paid contribution, so……” Because of the knowledge gained in the group, and taking this to the municipality, the batteries were paid for: “Good news, the community is paying for the mobility scooter!! She can be driving
around again in no time!!” This example shows that knowledge about institutions is shared through each other’s experiences.
Similar to coping with the condition and knowledge regarding medicines and treatments, knowledge sharing regarding institutions can be seen as a transfer of tacit
knowledge to other tacit knowledge in a socialization process (Nonaka, 1994). Furthermore, through dialogue or collective reflection like discussions, the tacit knowledge can become explicit knowledge by creating explicit concepts (Nonaka, 1994).
To summarize, the two mechanisms at work in sharing knowledge through sharing patient-experience are the socialization process and the externalization process. Also, as expected, knowledge is shared through the conversational model (Majchrzak, Wagner & Yates, 2013). Knowledge is shared by many contributors who make small contributions. Experience sharing is a form of collective knowledge management, because the whole community can learn from the shared experiences (Kirchner, Ramerita & Nabeth, 2009). As Kirchner, Tamerita and Nabeth (2009) argue, this happens simultaneously with personal knowledge management. One can distinguish collaborating around information (discussion based on personal experience), analyzing information (discussion based on personal
Sharing knowledge through modeling
Members of the group that are in a relative earlier stage of the rehabilitation process, tend to look up to members that are in a relative further stage of the rehabilitation process. The knowledge that is being shared through role-modelling is predominantly knowledge about what still can be achieved with the condition. This is important knowledge, because sometimes doctors will tell the patients that certain things like walking are not possible anymore. But with enough perseverance, they might defy the odds and learn it again (p.6): “[…] there they told me that I would never be able to walk again and to live home again […] Well, they got me angry. So I left the revalidation clinic walking.”
In the content analysis of the Facebook-group, 150 accomplishments were shared by the patients. Admiration for the accomplishments of other patients is shown 48 times in the Facebook-group. A patient (P7.) explains how admiration for another patients
accomplishments lead to gaining knowledge about what is still possible with the condition: “Because to me she was an example, I mean, she just got married, was twenty weeks pregnant, then got a terrible stroke and had to learn everything again, everything. She was completely disabled. And if I looked at her, a fantastic and beautiful person and always enjoying life, then I thought to myself, that’s what I want. That is exactly what I mean.” So through the accomplishments of others, patients learn what is still possible with the condition.
Clearly, sharing knowledge through modeling is a form of socialization. Socialization (Wagner, Vollmar & Wagner, 2014, pp. 36) “is mainly linked to direct, interpersonal
experience sharing, observation, and imitation”. As the above examples show, this is exactly what modeling in the Facebook-group contains.
Sharing knowledge through similarity
are coded where patients show recognition of a particular issue.
Sharing knowledge with patients with similar characteristics. An example of a
similarity is a comment on a post where a patient shares that she has been temporarily paralyzed on her left side, likes horse-riding and uses horse-riding as a form of therapy. Another patient shares these similarities about condition and use of horse-riding as a form of therapy. This discovery leads to much conversations between them. In these conversations, sharing knowledge about these topics also takes place. For example, about horse-riding with the consequences of their conditions: “I got out of my comfort zone… I sent an e-mail if they could make a booklet or website with information about tools in horse land, so people with physical limitations have can get around more easily with horse riding, and where you can also buy these tools and share tips and tricks…”
In the interviews it became clear that patients are also actively looking for similar people. The following example is about a person who is very angry with the healthcare system and is looking for people who have the same attitude. Unfortunately, he hasn’t found them yet (P6.): “The facebook group, maybe it is interesting to pick up some information, but most people, well, they are muddling along, and I’m not like that… I take big steps… so for me personally, I do not really benefit from it yet…”
Sharing knowledge when recognizing the issue. When patients share their experiences and
To summarize, patients decide to engage with patients that have similar characteristics as themselves and/or raise issues that are recognizable, and decide not to engage with patients that are too different or raise issues that are unfamiliar to them. During these conversations, knowledge sharing takes place. This finding is in line with research that shows that people who have similar norms with the group and can identify more with the online community, will tend to contribute more knowledge (Zhou, 2011; Bagozzi & Dholakia, 2006).
Discussion
The aim of this study was to gain a deeper understanding of the underlying processes of patient’s knowledge collaboration in online health communities. Four different process were found. The first is using the Facebook-group as a platform to share external health-related knowledge sources; the second is sharing internal knowledge through sharing patient-related experience; the third is sharing knowledge through modeling; and the fourth is sharing knowledge through similarities and recognition. In the following section, the findings will be compared to existing literature.
In theme 1, it became clear that the patients of the OHC share links to a variety of external knowledge sources in the group. The affordance of “link” (Wagner, Vollmar & Wagner, 2014) enabled this process. Furthermore, mechanisms of socialization,
the form of conversations.
In theme 2, sharing knowledge through sharing experiences was the central process. This is in line with the role of online communities in collective knowledge management, which is the sharing of knowledge with others (Kirchner, Razmerita & Nabeth, 2009). Two mechanisms that were found in this regard were the socialization process and the
externalization process. The internalization process was not found, probably due to the same reason as in theme 1. The combination mechanism wasn’t found, because the current theme focusses on experience, which is tacit knowledge. In combination, explicit knowledge is leveraged to create explicit knowledge, which was not the case in this theme. Also, as expected, knowledge is shared through the conversational model (Majchrzak, Wagner & Yates, 2013).
As Kirchner, Tamerita and Nabeth (2009) argue, collective knowledge sharing happens simultaneously with personal knowledge management. One could recognize collaborating around information, analyzing information and presenting information in the data. This differs from the findings of Kirchner, Razmerita and Nabeth (2009) in that in this thesis the step of evaluating, thus assessing the quality and relevance of knowledge, was not found. This might be the case because assessing the quality and relevance of knowledge is a difficult task in the OHC. Especially because people do not know each other very well in online communities (Faraj, Jarvenpaa and Majchrzak, 2011), and much people make small contributions (Majchrzak, Wagner & Yates, 2013.
In theme 4, it was shown that in OHC’s, people share knowledge based on similarity and recognition. This finding is in line with research that shows that people who have similar norms with the group and can identify more with the online community, will tend to
contribute more knowledge (Zhou, 2011; Bagozzi & Dholakia, 2006). It relates to the concept of online homophily (McPherson, Smith-Lovin & Cook, 2001, p.416): “Homophily is the principle that a contact between similar people occurs at a higher rate than among dissimilar people“. Homophily is a determinant of whether people would share their knowledge online or not (McPherson, Smith-Lovin & Cook, 2001).
One limitation of the current thesis is that there could be a bias in the
participants for the interviews. Only seven people of approximately 300 people responded. Some responded that they were not able to do an interview because of their condition. A part of the patients has aphasia, or does simply not have enough energy and therefore could not do the interview. So, there might be a bias that only the patients with the least severe conditions responded. Another limitation is that the patients of the OHC all had acquired brain damage, so it might be difficult to generalize the findings to OHC’s with other diseases. Therefore, future research should include OHC’s with different patient-groups and more quantitative research approach to ensure generalizability.
Especially because there is a call in the literature to research the processes of how knowledge sharing in OHC’s lead to an increase in quality of life and health-outcomes (Househ, Borycki & Kushniruk, 2014; Fernández-Luque & Bau, 2015).
This study contributes to the existing literature of knowledge-sharing by finding four underlying mechanisms of online knowledge sharing in an OHC. These findings were partly in line with previous research about general online knowledge sharing (Kirchner, Razmerita & Nabeth, 2009; Wagner & Yates, 2013; Wagner, Vollmar & Wagner, 2014). The differences have been discussed and this answers to multiple research calls to gain more insight in the underlying process of knowledge collaboration in online health communities (Faraj, Jarvenpaa & Majchrzak, 2011; Househ, Borycki & Kushniruk, 2014; Faraj, von Krogh, Lakhani & Monteiro, 2016).
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Appendix 2: codebook
Theme Category Codes Example quotes
Using the OHC as a platform to share external health-related knowledge sources (8 different categories; 45 different codes) Sharing knowledge through online patient-groups (3 different codes)
Reference to other general online-patient group (12 times coded)
Reference to other online-patient group with a specific goal (4 times coded)
Sharing knowledge from one ohc to another ohc (4 times coded)
P6“[…] Cbd en thc zijn beiden
cannabinoiden. […] Thc heeft tevens het effect dat het lichamelijk ontspant endus spasmen tegen gaat en je slaapt er ook nog eens als een blok op.[…] Grofweg zijn er 2 wietsoorten De sativa;geeft meer een head high en de indica;meer een bodyhigh oftewel lichamelijke ontspanning[…] “
“Graag wil ik jullie attenderen op een nieuwe pagina van de klankbordgroep hersenletsel Groningen-Drenthe. De klankbordgroep speelt een belangrijke rol bij o.a. Het hersenletselcentrum
Groningen Drenthe. Like de pagina om ook hierover op de hoogte te blijven.”
Sharing knowledge through blogs and articles (12 different codes)
Link to personal story (48times coded) Link to articles about helpful tools (3times coded)
Link to news article (4 times coded) Link to opinion article (11times coded) Link to article with tips to cope with nah (36 times coded)
Link to article with information about nah
P3. “Nou, ik had zelf een loopfiets gevonden, want ik wilde toch beter mij kunnen verplaatsen. Nou, dan deel ik die informatie. Dan zeg ik van, Simon, heb je hier wel aan gedacht. En dan onderzoekt hij het weer, en dan kan het weer gedeeld worden. Dus als zodanig is het netwerk heel praktisch.”
Link to article about rules and regulations regarding nah (2 times coded)
Link to article about healthcare (1 time coded)
Link to article about institutions related to nah (1 time coded)
Link to article where people share
achievement regarding rehabilitation nah (7 times coded)
Using knowledge gained offline as input for article (1 times coded)
Using OHC as input for blog (1 time coded)
ieder[…] anders. En met datgene wat ik nu aan het doen ben, moet ik me er continu bewust van zijn dat ik maar 1 van de velen ben. Ik wil me steeds bewust blijven van de grote verschillen die er zijn.” Sharing knowledge about offline patient-groups (2 different codes)
Reference to an offline group (5 times coded)
Sharing knowledge gained in an offline patient group in OHC (1 time coded)
P2. “Ik ben via die focusgroep met iemand
aan de praat geraakt, en daardoor heb ik andere medicijnen. En dat heeft mij heel erg veel geholpen.”
P2. “Door mij zijn meerdere mensen aan
de CBD-olie gegaan.” Sharing knowledge about offline professional events (5 different codes)
Reference to an upcoming lecture (14 times coded)
Possibility to enroll in nah related research (3 times coded)
Possibility to become professional experience expert (2 times coded) Reference to political debate regarding healthcare (1time coded)
en zit in de screening. Misschien zijn er meer die zich willen opgeven?
Het Tapass onderzoek van de universiteit van Amsterdam.”
“Ik lees net dat de Hersenstichting ook lezingen geeft aan bedrijven en organisaties. Misschien handig voor mensen die onbegrip ervaren op de werkplek. Misschien wisten jullie dit al maar beter mee verlegen dan om verlegen.” Sharing knowledge about offline social events (4 different codes)
Information about offline social event with group members (11 times coded)
Information about public offline nah-related social event (6 times coded)
Information about nah related sports event (15 times coded)
Sharing knowledge gained in offline social event on OHC (2 times coded)
P3. “Ja, doordat een vriendin van mij dat zei. Heb je wel eens aan Veldenkreis gedacht.”
P3. “Maar als ik lees dat iemand door een bepaalde behandeling, ik heb er heel veel zelf uitgezocht - stel dat iemand het nog maar net heeft - dan zou ik bijvoorbeeld wel kunnen vragen, hebben jullie ervaring met de Veldenkreis-methode?” Sharing knowledge about informative websites (10 different codes)
Link to website about healthcare institutions
(6 times coded) n.v.t.
Link to website about nah-related treatment (11 times coded)
Link to website about nah-related tools (21 times coded)
Link to website about nah-related apps (10 times coded)
rules/legislations (2 times coded)
Link to website about nah-related research (1 time coded)
Link to website about nah-related politics (4 times coded)
Link to website about tips to cope with nah (4 times coded)
Link to website about nah-related institutions (1time coded) Sharing
knowledge about informative films (6 different codes)
Reference to film about experience having
nah (10 times coded) n.v.t.
Reference to film showing helpful tools related to nah (4 times coded)
Reference to film sharing tips to cope with nah (9 times coded)
Reference to film sharing accomplishment nah (3 times coded)
Reference to informative film about nah (7 times coded)
Reference to film about nah treatment (1time coded) Sharing knowledge about informational books (2 different codes)
Reference to informative book about nah
Reference to book about personal experience with nah (4 times coded) Sharing knowledge
through sharing patient-experience (6 different categories; 26 different codes) Sharing/discussing experiences related to coping with the condition (9 different codes).
Asking directly for patient-experience about coping with NAH personally (41 times coded)
Asking directly for patient-experience about a family member/closely related person with NAH regarding coping with the condition (1time coded)
Asking for advice regarding coping with NAH (66 times coded)
Asking advice regarding coping with NAH for a family member/closely related person regarding coping with the condition (1time coded)
Providing direct patient-experience about coping with NAH personally (485 times coded)
Providing direct patient-experience about a family member/closely related person with NAH regarding coping with the condition (5 times coded)
Providing advice based on
patient-experience on NAH regarding coping with the condition (160 times coded)
NAH-related discussion based on patient-experience regarding coping with the condition (235 times coded)
Gaining useful knowledge about coping with condition, based on experiences others
P.1. “Maar je moet zelf het leven maar
opnieuw gaan uitvinden. En op een gegeven moment weet je het ook even niet. Bijvoorbeeld, ik loop maar elke keer tegen de moeheid aan, maar aan zo'n
facebookgroep is het dus makkelijk om te zeggen: ik loop hier tegenaan, hoe doen jullie dat? Dan komen er reacties vaak wel op. En dan oh, die doen dat toch heel anders.”
P.7 “Je hebt geen revalidatie meer, je bent uitbehandeld zeg maar. En dan ben je gewoon thuis. En dan moet je er mee zien te dealen, dat het dus echt niet meer wordt zoals het was.. en nu […] en dat noemen ze dan in vaktermen de chronische fase.” P.1 “Ja, wij zijn in principe allemaal
Sharing experiences related to medicine and treatment (8 different codes)
Asking directly for patient-experience about medicine and treatment NAH (12 times coded)
Asking for advice regarding medicine and treatment NAH (18 times coded)
Asking advice regarding medicine and treatment for a family member/closely related person (1time coded)
Providing direct patient-experience about medicine and treatment personally (83 times coded)
Providing direct patient-experience about a family member/closely related person with NAH about medicine and treatment (3 times coded)
Providing advice based on patient-experience on medicine and treatment (50 times coded)
NAH medicine and treatment -related discussion based on patient-experience (245 times coded)
Gaining useful knowledge about medicine and treatment, based on experiences others (10 times coded)
“[…]vanmiddag HA via telefonisch spreekuur gebeld, met de mededeling dat ik stop met simvastatine […]. Afgelopen week werd de snijdende spierkramp zo heftig, plus vreselijk benauwd op de borst […] Nu krijg ik nog 1 middel om te proberen (zonder statine) […]”.
P.2 “Dat je gewoon zelf achter alle
medicijnen en nieuwe ontwikkelingen aan moet, en dat je dat zelf allemaal bij neurologen moet aandragen. Want ze denken gewoon helemaal niet met je mee.” Sharing experiences related to institutions (5 different codes)
Asking for advice regarding condition-related institutions (12 times coded) Providing direct patient-experience about coping with NAH about condition-related
institutions (74 times coded) Providing advice based on patient-experience on NAH regarding condition related institutions (12 times coded) NAH-related discussion based on patient-experience regarding condition related institutions (142 times coded)
Gaining useful knowledge about condition-related institutions, based on experiences others (2 times coded)
nu staat er een kapotte scootmobiel in de schuur en iemand is in zijn vrijheid beperkt!!!”
“Ik kreeg onlangs nog een nieuwe accu nadat ik aan gaf dat hij mijn scootmobiel me steeds vaker liet staan […]Het ligt dus ook wel aan de gemeente waar je in woont […].”
“Volgens mij heeft de Gemeente een onderhoudsverplichting. Waarschijnlijk betaalt ze ook een eigen bijdrage, dus...”
“Goed nieuws gemeente betaald gelukkig voor de accu's!! Ze kan straks weer heerlijk rijden!!” Sharing knowledge through modeling (1 category) Sharing knowledge through modelling (4 different codes)
Share accomplishment (150 times coded) Showing admiration for another group-member (48 times coded)
Learning from other accomplishment (23 times coded)
Describing another patient as a role model and learning from him/her (2 times coded)
“Want zij was voor mij wel zoiets van, dat is wat ik bedoel, ben je net getrouwd, ben je 20 weken zwanger, krijg je een hele zware bloeding, heeft alles opnieuw moeten leren, alles. Kon niets meer. En als ik dan toen naar haar keek, wat een fantastisch mooi mens en wat een levensgenieter het is, toen dacht ik echt van ja, dat wil ik. Dat is precies wat ik bedoel.”
Sharing knowledge based on similarity and recognition (2 different categories) Sharing knowledge with similar persons (3 different codes)
Similar Personality (80 times coded) Ignores post/comments because experiences no match with the person (7 times coded) Searches actively for similar persons (6 times coded)
recognizing the issue (2 different
