Online health information seeking: how people with multiple sclerosis find, assess and integrate treatment information to manage their health

Abstract

Background and objective

The Internet is increasingly prominent as a source of health information for people with multiple sclerosis (MS). But there has been little exploration of the needs, experiences and preferences of people with MS for integrating treatment information into decision making, in the context of searching on the Internet. This was the aim of our study.

Design

Sixty participants (51 people with MS; nine family members) took part in a focus group or online forum. They were asked to describe how they find and assess reliable treatment information (particularly online) and how this changes over time. Thematic analysis was underpinned by a coding frame.

Results

Participants described that there was both too much information online and too little that applied to them. They spoke of wariness and scepticism but also empowerment. The availability of up‐to‐date and unbiased treatment information, including practical and lifestyle‐related information, was important to many. Many participants were keen to engage in a ‘research partnership’ with health professionals and developed a range of strategies to enhance the trustworthiness of online information. We use the term ‘self‐regulation’ to capture the variations in information seeking behaviour that participants described over time, as they responded to their changing information needs, their emotional state and growing expertise about MS.

Conclusions

People with MS have developed a number of strategies to both find and integrate treatment information from a range of sources. Their reflections informed the development of an evidence‐based consumer web site based on summaries of MS Cochrane reviews.

Background

Over the last 20 years, the multiple sclerosis (MS) treatment and information landscape has changed dramatically. While it remains a disease with no cure, the advent of disease‐modifying drugs in the mid‐1990s heralded a period of rapid advancements in the understanding and management of MS.1 This coincided with the ready opportunity to find and share information afforded by the Internet. In fact, while health professionals and MS societies remain important and trusted information sources for people with MS, the Internet is gaining prominence.2, 3

Concurrent with these shifts in treatment and information availability has been a broader move to engage consumers with the evidence‐based health movement.4, 5 Evidence‐based treatment information is increasingly being provided to consumers online.6, 7 Research has shown that evidence‐based health information may improve people's knowledge, capacity to manage their health and health literacy.8 In MS, searching for health information online may help consumers cope better with their disease and increase their confidence in therapy.9

Many people with MS seek active roles in relation to medical decision making and understand complex health and research information.10 Information is a critical component of informed decision making and self‐determination, yet the unmet information needs of people with MS are well documented.11, 12 Previous studies have explored online health information seeking in MS,2, 3, 9, 13 but few have considered how people integrate MS treatment information from online and offline sources.

This research was conducted as part of the four‐stage IN‐DEEP project, which aimed to make high quality evidence more accessible and meaningful to people with MS and their families for use in their self‐management decisions.14 Each of the four stages of the IN‐DEEP project was conducted in parallel in Australia and Italy. The final output of the project in both countries was a website for consumers (people with MS and their family members) based on summaries of Cochrane reviews of MS treatment.15 This study presents the Australian results of the first stage. The aim of this first stage was to explore the needs, experiences and preferences of people with MS for integrating treatment information into their decision making, in the context of searching on the Internet. We use the term ‘MS treatment’ in a broad sense, meaning any therapeutic intervention (conventional, lifestyle‐related, alternative or experimental) that a person with MS may consider for managing their health.

Methods

Research design

We used a qualitative study design, with an interpretivist framework16 guiding the analysis because we were seeking to understand the lived experience of people's information seeking and their needs, experiences and preferences for integrating MS treatment information into their decision making.17, 18

Participants

We included people with MS, and family members of people with MS, in one of four focus groups or an online forum. We included family members because they might also seek MS information.19 The focus groups were conducted first, but respondents were offered the option of the online forum to facilitate greater participation.20 The decision to conduct four focus groups was determined by resource constraints of the researchers, rather than being determined by data saturation. The addition of the online forum allowed data saturation to be reached.

Recruitment was conducted using purposive sampling through the networks of MS Australia, the peak body providing advocacy and support for Australians with MS. This captured MS Australia volunteers, support group members and general information subscribers, amongst others. Interested participants were screened for inclusion and selected based on a sampling frame and their availability to attend a focus group.

Sixty participants (51 people with MS, nine family members; 47 females, 13 males) took part in either a focus group (n = 27) or the online forum (n = 33). Participant demographics were similar in both participation methods; mean age was 50 ± 12.0 years, mean length of time with MS was 11.2 ± 9.2 years and n = 28 (45%) of participants had completed tertiary education. Participant selection for the focus groups was informed by a sampling frame, to reflect the broader MS population and capture a range of experiences.21 We included adults between 18 and 69 years, a ratio of women to men of 3:1, those recently diagnosed with MS (<3 years) and those living with MS for longer (>4 years). For the online forum, we invited participants who were unable to attend a focus group and conducted additional recruitment activities. We did not use the sampling frame for the online forum. Instead all interested participants who were people with MS or family members of people with MS were invited to attend.

The focus groups took place in Melbourne and Hobart, Australia. Where possible, groups were stratified according to whether participants were a person with MS or a family member and by time since diagnosis, to facilitate the free sharing of information.22 Previous experience of the research team indicated that people with MS may self‐censor in the presence of family members, and those newly diagnosed with MS may feel overwhelmed by people with more obvious disability. Stratification was not possible in the online forum.

All participants provided written informed consent to participate. Ethical approval was obtained from the Faculty of Health Sciences ethics committee at La Trobe University. Participants in focus groups were reimbursed $50 for costs related to their attendance.

Procedure

The focus groups were held at a local MS Australia office and lasted approximately 60 minutes. They were conducted by a moderator, and a note‐taker (SH, AS) experienced with group facilitation. Participants were sent a topic list 1 week in advance and were invited to reflect on what they might share. The focus groups were audio‐recorded and transcribed verbatim.

Initially, participants were asked to describe the kind of information‐seeker that they were (for example someone who likes to know as much as they can, or operates on a ‘need to know’ basis). This introductory activity became something of an ‘interaction exercise’23 as participants immediately shared their experiences and engaged with those shared by others. We had four prompts to facilitate discussion: (i) where do you get reliable information on the evidence of treatments for MS, (ii) what kinds of information do you need, and how do these needs change over time, (iii) how do you use the Internet to access information about treatments for MS and (iv) how do you assess the quality and usefulness of this information? Few prompts were required in practice; the interaction between participants allowed the researchers to take a ‘structured eavesdropping’ approach,24 only interrupting to seek clarification, or guide the conversation towards unexplored topics.22

The online forum, hosted on a private discussion board of the MS Australia website, was held over 4 weeks. Each participant was provided with an anonymous username and password and invited to post answers to ten questions or comment on others’ posts. While some participants referred to others’ posts, there was little direct interaction between participants. Questions were based on the focus group prompts and designed to capture the breadth of information shared in the focus groups. The questions included ‘tell us about your experiences finding information about treatments and therapies to manage MS on the Internet’ and ‘how have your information seeking or your information needs changed over time?’ The researchers checked all comments for appropriateness but did not engage in any discussion. A weekly reminder email was sent to all participants, and a copy of the transcript downloaded at its conclusion.

Data analysis

Two researchers (AS, KG) read the transcripts several times to identify emerging themes and categories within each theme. Using NVivo software,25 we developed a coding frame and used this to organise the data into categories and identify themes and relationships.26 A third researcher (SH) independently read the transcripts and the emerging themes and provided comment. The focus group and online forum data were initially analysed separately but due to the overlapping nature of the themes the same basic codes were applied to each set of data. We analysed the data from family members and people with MS together as we felt there were too few family members included to reliably draw conclusions about similarities and differences.

Rigour and trustworthiness

The trustworthiness of qualitative information can be strengthened in a number of ways.18 Our sampling frame, and the use of multiple data collection methods, enhanced the credibility of our findings, ensuring we captured a range of experiences. We also employed a reflective approach, taking notes and keeping a research journal during data collection and analysis. To strengthen the confirmability of our findings, we employed member checking of focus group data, inviting participants to comment on a preliminary analysis of the focus group they attended. We also sought input from the project's consumer advisory group on the developing themes. To enhance the transferability of our findings, we provide detailed information about the participants and setting. Further, we use rich descriptions and direct quotes to illustrate the themes generated, particularly where experiences and views diverged, and to make transparent the process of interpretation.

Results

The results generated four main themes: Information seeking changes over time: too much, too little, not quite right; Emotional drivers and consequences of information seeking; The type of information being sought; and Integrating Internet information with information from other sources. This lead us to propose a concept we term self‐regulation.

Information seeking changes over time: too much, too little, not quite right

The majority of participants used the Internet as a source of information about MS treatments. While some no longer sought out information about MS treatments online, all participants had used the Internet for MS treatment information in the past.

Many participants described an initial period of indiscriminate searching for information about MS soon after diagnosis, of wanting to know everything about MS and using a variety of sources, including many different websites. While these stories were more commonly heard from younger participants, or those more recently diagnosed with MS, there were others who ‘discovered’ the Internet later in their journey with MS and similarly described a corresponding period of high Internet use.

I constantly trawled the Internet looking for new information, joining discussion groups and the MS society. I asked my GP, neuro[logist] and anyone else that had an interest in medicine all types of questions [Person with MS, online forum]

When I was first diagnosed in 1998, I became a sponge for information, I read every conceivable piece of information I could get my hands on, either via the MS library to overseas MS groups. I went to the community centre and immersed myself in all the literature. [Person with MS, online forum]

Some participants described an initial reluctance to search for information. Others described ongoing high levels of information‐seeking and wanting to know as much as possible about MS.

So basically after that I did sort of minimal [information searching] (…) to have a rough idea but it was all very scary and overwhelming. And then last August when I was actually given the diagnosis I was a little bit more proactive and then I suppose increasingly so as I've sort of come to terms with it. [Person with MS, focus group]

I do lots of research but I find that I need to do lots of research, I feel more important when I do research. I don't always believe what I read, but I'd still rather have that decision to make. [Person with MS, focus group]

Many people described a dichotomy that exists with information about MS, particularly online; there can be both too much information yet too little on what they want to know. Where the experience was too much, participants felt overwhelmed or confused, and many reached ‘information overload’. For some, this was a reason to avoid the Internet.

We have so much that is thrown at us, it is up to us to filter through and go with that information that we are comfortable with, whether it's alternative, complementary or normal western medicine, it's up to us, because we just get it thrown at us every day constantly. [Person with MS, focus group]

I reached a point of over‐saturation. I snapped at the end of it because it was just too much information and just too overbearing to handle (…). Currently I don't do that much, which is odd. [Person with MS, focus group]

Some participants said that despite the wealth of information available online, personally applicable or trustworthy information could be hard to find or to determine.

In general, MS is too complex and varies too much for each person for me to apply information I find online to myself. [Person with MS, online forum]

Over the last five or so years I have come to think there is too much out there on the internet and I don't know how to trust everything that is said. [Person with MS, online forum]

Emotional drivers and consequences of information seeking

There was a spectrum of emotions felt towards online information seeking and what was found. At one end, people felt a high level of wariness and scepticism. Many participants were sceptical about the quality of information available online and were reluctant to rely too heavily on it.

I'm sort of a bit sceptical as well (…). The difficulty is because the people that were talking it [MS treatment] down could've had a vested interest in talking it down (…) I was concerned about where the information comes from and who's saying what. [Person with MS, focus group]

I'm careful about the websites I go to, I only trial with the medical type ones or natural therapy type ones but not just any Joe Blogs, I just don't read any of that [Family member, online forum]

Some participants were wary of the negative emotional consequences of online information‐seeking. Online treatment information could be scary or depressing, or generate false hope. Some participants said they avoided online forums or user‐generated web sites as they were overly negative.

I now try to seek information on a fortnightly basis to minimise the effect on emotion and depression [Person with MS, online forum]

I find them [Internet support groups] very one sided, I think they're really skewed to the negative, and I really don't like to be around negativity (…) it just doesn't do my own health any good at all. [Person with MS, focus group]

For others, being informed was empowering or reassuring. Online forum participants in particular described the need to be proactive with information seeking, and the Internet as a highly useful resource for building their knowledge.

Knowledge is Power… I research the Internet, library, MS Research Australia magazine & websites, social MS internet sites (and) speak to fellow lecturers at University. It's amazing the research people are doing that isn't published widely. [Person with MS, online forum]

The type of information being sought

Many participants, particularly online forum participants, described looking for the latest information about currently available medicines or new or experimental therapies. The Internet was seen as particularly relevant for keeping up to date with the latest developments.

These days I am very interested in new trends and findings for MS. Even drug breakthroughs, even though I have stopped Copaxone (…). Likewise for new treatments, e.g. I like to read about progress being made with stem cell therapies. [Person with MS, online forum]

Many, although, were also searching for practical or lifestyle information and things they could do to improve their health, such as diet. Some participants were looking for suggestions from other people with MS on solutions to manage symptoms.

I think the main things are the sorts of things that can help our lifestyle, like exercises for people with MS and what the latest is on the treatments. [Family member, focus group]

That's why I like reading books like [Author name] wrote and things like that, personal … ‘I've got MS, this is how I cope’, that's what I love to read, I love to read the personal view as well as the medical thing. [Family member, focus group]

Many participants referred to the importance of independent and unbiased information to guide their treatment decisions. Information provided or funded by pharmaceutical companies, or by an organisation or individual who was trying to sell something, was considered particularly unhelpful.

You're very mindful of the influence of (…) pharmaceuticals [and] who's responsible for that particular website. That's where we want to get an impartial site which doesn't lean either way and is not trying to sell a product or promote something. [Person with MS, focus group]

For many participants, medically expert sources (i.e. health professionals, the MS Society and ‘official’ medical websites) were the most reliable. Some people also felt others with MS were an independent and thus reliable source.

I find the information from my neurologist to be the most reliable and trustworthy and his expertise is what makes me feel confident about therapies. [Person with MS, online forum]

Everything I see, read, hear I always discuss at my peer support group meeting to hear other people's opinions because doctors deal only in proven science. [Person with MS, online forum]

There was some variability in the level of detail people were looking for. Many participants wanted ‘the full picture’ about new MS treatments they were considering, meaning both the positive and negative effects. Equally, a small number of participants, particularly those newly diagnosed, expressed a fear of finding out negative information.

I want to find the documents and find out what were the results, how good was it and what are the risks so that I can make my own evaluation. [Person with MS, focus group]

I only want to know ‘positive’ information, such as what percentage of people have MS symptoms only once in their lives, or how many have slow progression. I don't read the gloomy statistics or about unpleasant symptoms. I am a coward! [Person with MS, online forum]

The desire for personally applicable information, and the difficulty in finding and applying information for their specific needs, was described by many. For some, just the variable nature of MS made it difficult to apply the information to their situation. Also, for some groups of people with MS, particularly men, those with primary progressive MS and family members of people with more advanced MS, particular difficulties were encountered when trying to find relevant information.

Unfortunately I have not found much information on the Internet related to Primary Progressive Multiple Sclerosis. I really feel as though I am on an island in a sea of lots of confusion. [Person with MS, online forum]

One of the larger challenges I found was being a male age 21 with MS – I was in a massive minority of information. If I was female, age 35–50 then I probably wouldn't feel so alone. As you trawl the internet, you definitely find a larger number of women in the MS‐based Internet communities than men. [Person with MS, online forum]

Integrating Internet information with information from other sources

The Internet was perceived as a vast, up‐to‐date resource but it was rarely described as a stand‐alone source. It was used in a variety of ways to complement the information obtained through other sources, such as research before or after a doctor's visit or to try and triangulate information obtained through other channels.

I would research the Internet for reliable trustworthy information about any treatment first. Usually I would check MS Australia website and also other countries' MS web sites. Then discuss the treatment with my neurologist and GP. [Person with MS, online forum]

So what I'll do is I'll gather lots of information from lots of different websites (…) then I sort of have a look at everything and then I make up my own mind as to what things are helpful and what's not. [Person with MS, focus group]

While some participants described a confidence in their ability to assess and use the information they found online, the majority of participants expressed a desire to engage in a ‘research partnership’ with their health professional.

I suppose I just put it all together and if bits don't fit I'll just go back and try and fill the bits in with other Internet checks. And then often (…) I'll just go to him [General Practitioner] with all this information (…) and he'll explain it. So there's a medically trained person who can explain what that is and if that's real which is really handy at the moment. [Person with MS, focus group]

I wanted a neurologist that would talk to me about the medical information and was prepared to help me find that information and the first two I felt were expecting me to believe what they said without being willing to say, ‘here's some medical sites that you can go and look at to pursue that further’. [Person with MS, focus group]

Self‐regulation of information seeking

Participants described variations in their health information seeking over time, in response to changing information needs, their emotional state and growing expertise about MS and confidence in their ability to interpret treatment information. These changing strategies over time indicate that consumers self‐regulate their health information seeking. These ‘self‐regulation’ strategies including refining the amount of searching they did, the sources they used, the type of information they looked for and the strategies they employed to improve the quality of treatment information.

Many participants described a similar pattern of changes of time. Initially, they looked anywhere and everywhere for MS treatment information, before reaching ‘information overload’. This then seemed to be the catalyst for less frenzied searching.

Over five and a half years my information research has changed greatly. I was all gung‐ho in the early days. Now I tend to read new stuff to see if it applies to me and if it doesn't I will just put in the back of my mind. So many things come up in the press for (…) “the miracle cure” and then you never hear another word about it. So I am somewhat weary of stuff that doesn't go through the MS Society first. [Person with MS, online forum]

Some participants talked about being ‘in denial’ after diagnosis and carefully increasing their information seeking over time. Others described high ongoing levels of information‐seeking, driven by a need to feel fully informed.

I'm probably obsessive to the point where I read anything I can, anyone that's written a book or whatever, (…) because I feel so helpless that he's got it. [Family member, focus group]

As people gained expertise, they described refining their information sources to their trusted sources and employing a range of strategies (such as filtering their information through a range of sources) to improve its quality. Many described seeking only the latest information about new treatments. Many, but not all, participants described reduced Internet use and some described a very passive information‐seeking pattern at this point. Some of those that continued using the Internet frequently did so to participate in online support groups and forums, for ongoing information and support.

Now I don't want to hear anything about it, it bores me silly (…). I see my neurologist once a year and I know he'll tell me anything I need to know and if something comes up I'll hear it because I watch the news and I read the papers. [Person with MS, focus group]

I use the MS forum website from time to time (…). It is really informative if asking about specific things e.g. catheter use or side effects of treatment (…). There is always someone who has experienced something and everyone is kind enough to share their experiences. I find this very supportive. [Person with MS, online forum]

Discussion

Many people with MS described feeling being bombarded with information, often reaching information overload. Despite this, finding personally relevant information (or knowing how to make it personally relevant) is difficult for many. There is a high desire for and vigilance about unbiased information from independence of information sources, particularly online. Many people with MS and their family members talked of seeking up‐to‐date, accurate and personally applicable information. While some are seeking factual (research‐based) information presenting all positive and negative effects of treatments, a minority, particularly soon after diagnosis, want to avoid being overwhelmed by too much negative information. Many seek experiential information from others with MS and will often do this both online and in person.

Scepticism of the Internet as a source of quality information was common. Health professionals and MS Societies remain the most trusted information sources. Many participants talked of their desire for guidance from these groups about trusted websites and assistance to make sense of the information found online. Participants had developed a range of self‐regulation strategies over time in response to changing information needs, their emotional state and growing expertise about MS and confidence in their ability to interpret treatment information.

In relation to strengths and limitation of this research, we employed a number of strategies, such as keeping a reflective journal and asking focus group participants to check our interpretations to enhance the strength of study findings.18 The addition of the online forum allowed us to include participants who may have been unable to attend in person due to distance or disability.20 We note, however, that due to our online research method, people who searched for MS information offline may have been under‐represented.3 In addition, we did not have enough family members (n = 9/60) to develop a clear picture of any differences in information seeking between people with MS and this group, or of any major differences within this group.

Much of the research into information‐seeking in people with MS identifies a desire for accurate and timely information, that is, frequently unmet or only partially met.11, 12, 27 While we identified pockets of unmet need, many people described the problem of too much information, particularly online. Our finding that the Internet is used amongst a range of other information sources to augment, rather than replace offline sources, is consistent with other MS research.3, 13 People with MS most commonly seek health information on the Internet before and after doctor visits.2, 28

While others have found that people with MS do not readily discuss their online searching with doctors,9, 13 we found that discussions of Internet searching with doctors were highly desired. Whether or not patients discuss their use of the Internet is likely dependent on the attitudes of patients towards their information needs, the attitude of health professionals towards online information and the nature of the doctor–patient relationship. We noted the proactive attitude that many focus group and online forum participants described in getting their information needs met.

While the Internet affords the opportunity to learn more about MS and potential treatments, it is particularly difficult for consumers to find and apply personally relevant information.3, 29, 30 A dichotomy exists within the health information landscape: there is a high level of wariness about the quality of online information, and a preference to rely on the information provided by health professionals, yet the Internet is a go‐to source for many.3, 13

The idea that consumers ‘self‐regulate’ their information seeking in response to a range of factors may be a novel term but is not a new concept. For example, Jordan et al.29 explored patient perceptions of health literacy and found that patients' prior experience, attitudes, knowledge and their physical or emotional state could influence how, when and where they sought health information.

The concept of health literacy has particular saliency for our finding of self‐regulation. Health literacy has been described as a series of consecutive steps in an iterative process; an individual must first be able to access medical or clinical information, understand and derive meaning from it, interpret and evaluate what they have learned and communicate an informed decision.31 Participants described that they could access MS treatment information, and the majority had a desire to make an informed decision but they could not always understand and derive meaning from it nor interpret and evaluate its usefulness to themselves. Strategies such as filtering the information through a range of sources and using a research partnership with health professionals speak to the ways in which people were building the bridge between accessing information and making an informed decision.

We utilised the results of this study as the foundation for the subsequent stages of the Australian IN‐DEEP project, culminating in an evidence‐based MS treatment web site for consumers.15 The findings of this study endorse many concepts of best practice in health information web sites, such as presenting benefits and harms and the source and currency of evidence.32 But our results suggest that more is needed to help consumers understand what good quality evidence is and how this evidence applies to them. Within this, consideration must be given to the potential emotional consequences of uncertain or ‘negative’ information.

Acknowledging the desire for consumers to discuss information with health professionals, a website should try to facilitate the information being shared with health professionals. Our results suggest health professionals and MS Societies can play an integral role in recommending trusted websites and being open to discussing with their patients the results of their Internet searching. For MS information providers, being able to address the different types of information people are seeking, at the different stages of their journey with MS, and making it personally relevant is a particular challenge. However, people with MS are clear about the kind of information that they are seeking and should be involved in the production of consumer treatment information about MS.33, 34

Conclusion

The Internet is perceived as a vast and up‐to‐date resource by many people with MS but uncertainty exists about finding and appraising good quality, personally applicable treatment information. Over time, many people develop a number of sophisticated strategies to integrate MS treatment information from a range of sources enabling them to make decisions about their health with which they are comfortable.

Key reflections of participants in this study, such as the difficulty of determining the personal applicability of information and/or evidence, the desire to engage in a research partnership with health professionals and the emotional consequences of health information, are all relevant to MS societies, health professionals and others involved in presenting treatment information to consumers. These reflections informed the development of an evidence‐based consumer web site using summaries of MS Cochrane reviews.15

Funding

This study was funded by Multiple Sclerosis Research Australia (MSRA), Grant‐in‐Aid No. 00025 and Multiple Sclerosis Australia ACT/NSW/VIC. Richard Osborne was funded, in part, by a National Health and Medical Research Council of Australia Population Health Career Development Award.

Conflicts of interest

The authors declared no conflict of interest with respect to the research, authorship and/or publication of this article.