Online support groups are one of the major ways in which the Internet has fundamentally changed how people experience health and health care. They provide a platform for health discussions formerly restricted by time and place, enable individuals to connect with others in similar situations, and facilitate open, anonymous communication.

Previous studies have identified that individuals primarily obtain two kinds of support from online support groups: informational (for example, advice on treatments, medication, symptom relief, and diet) and emotional (for example, receiving encouragement, being told they are in others’ prayers, receiving “hugs”, or being told that they are not alone). However, existing research has been limited as it has often used hand-coded qualitative approaches to contrast both forms of support, thereby only examining relatively few posts (<1,000) for one or two conditions.

In contrast, our research employed a machine-learning approach suitable for uncovering patterns in “big data”. Using this method a computer (which initially has no knowledge of online support groups) is given examples of informational and emotional posts (2,000 examples in our study). It then “learns” what words are associated with each category (emotional: prayers, sorry, hugs, glad, thoughts, deal, welcome, thank, god, loved, strength, alone, support, wonderful, sending; informational: effects, started, weight, blood, eating, drink, dose, night, recently, taking, side, using, twice, meal). The computer then uses this knowledge to assess new posts, and decide whether they contain more emotional or informational support.

With this approach we were able to determine the emotional or informational content of 40,000 posts across 14 different health conditions (breast cancer, prostate cancer, lung cancer, depression, schizophrenia, Alzheimer’s disease, multiple sclerosis, cystic fibrosis, fibromyalgia, heart failure, diabetes type 2, irritable bowel syndrome, asthma, and chronic obstructive pulmonary disease) on the international support group forum Dailystrength.org.

Our research revealed a slight overall tendency towards emotional posts (58% of posts were emotionally oriented). Across all diseases, those who write more also tend to write more emotional posts—we assume that as people become more involved and build relationships with other users they tend to provide more emotional support, instead of simply providing information in one-off interactions. At the same time, we also observed that older people write more informational posts. This may be explained by the fact that older people more generally use the Internet to find information, that they become experts in their chronic conditions over time, and that with increasing age health conditions may have less emotional impact as they are relatively more expected.

The demographic prevalence of the condition may also be enmeshed with the disease-related tendency to write informational or emotional posts. Our analysis suggests that content differs across the 14 conditions: mental health or brain-related conditions (such as depression, schizophrenia, and Alzheimer’s disease) feature more emotionally oriented posts, with around 80% of posts primarily containing emotional support. In contrast, nonterminal physical conditions (such as irritable bowel syndrome, diabetes, asthma) rather focus on informational support, with around 70% of posts providing advice about symptoms, treatments, and medication.

Finally, there was no gender difference across conditions with respect to the amount of posts that were informational versus emotional. That said, prostate cancer forums are oriented towards informational support, whereas breast cancer forums feature more emotional support. Apart from the generally different nature of both conditions, one explanation may lie in the nature of single-gender versus mixed-gender groups: an earlier meta-study found that women write more emotional content than men when talking among others of the same gender – but interestingly, in mixed-gender discussions, these differences nearly disappeared.

Our research helped to identify factors that determine whether online content is informational or emotional, and demonstrated how posts differ across conditions. In addition to theoretical insights about patient needs, this research will help practitioners to better understand the role of online support groups for different patients, and to provide advice to patients about the value of online support.

The results also suggest that online support groups should be integrated into the digital health strategies of the UK and other nations. At present the UK plan for “Personalised Health and Care 2020” is centred around digital services provided within the health system, and does not yet reflect the value of person-generated health data from online support groups to patients. Our research substantiates that it would benefit from considering the instrumental role that online support groups can play in the healthcare process.

Read the full paper: Deetjen, U. and J. A. Powell (2016) Informational and emotional elements in online support groups: a Bayesian approach to large-scale content analysis. Journal of the American Medical Informatics Association. http://dx.doi.org/10.1093/jamia/ocv190

Ulrike Deetjen (née Rauer) is a doctoral student at the Oxford Internet Institute researching the influence of the Internet on healthcare provision and health outcomes.

Dementia affects about 44 million individuals, a number that is expected to nearly double by 2030 and triple by 2050. With an estimated annual cost of USD 604 billion, dementia represents a major economic burden for both industrial and developing countries, as well as a significant physical and emotional burden on individuals, family members and caregivers. There is currently no cure for dementia or a reliable way to slow its progress, and the G8 health ministers have set the goal of finding a cure or disease-modifying therapy by 2025. However, the underlying mechanisms are complex, and influenced by a range of genetic and environmental influences that may have no immediately apparent connection to brain health.

Of course medical research relies on access to large amounts of data, including clinical, genetic and imaging datasets. Making these widely available across research groups helps reduce data collection efforts, increases the statistical power of studies and makes data accessible to more researchers. This is particularly important from a global perspective: Swedish researchers say, for example, that they are sitting on a goldmine of excellent longitudinal and linked data on a variety of medical conditions including dementia, but that they have too few researchers to exploit its potential. Other countries will have many researchers, and less data.

‘Big data’ adds new sources of data and ways of analysing them to the repertoire of traditional medical research data. This can include (non-medical) data from online patient platforms, shop loyalty cards, and mobile phones — made available, for example, through Apple’s ResearchKit, just announced last week. As dementia is believed to be influenced by a wide range of social, environmental and lifestyle-related factors (such as diet, smoking, fitness training, and people’s social networks), and this behavioural data has the potential to improve early diagnosis, as well as allow retrospective insights into events in the years leading up to a diagnosis. For example, data on changes in shopping habits (accessible through loyalty cards) may provide an early indication of dementia.

However, there are many challenges to using and sharing big data for dementia research. The technology hurdles can largely be overcome, but there are also deep-seated issues around the management of data collection, analysis and sharing, as well as underlying people-related challenges in relation to skills, incentives, and mindsets. Change will only happen if we tackle these challenges at all levels jointly.

As data are combined from different research teams, institutions and nations — or even from non-medical sources — new access models will need to be developed that make data widely available to researchers while protecting the privacy and other interests of the data originator. Establishing robust and flexible core data standards that make data more sharable by design can lower barriers for data sharing, and help avoid researchers expending time and effort trying to establish the conditions of their use.

At the same time, we need policies that protect citizens against undue exploitation of their data. Consent needs to be understood by individuals — including the complex and far-reaching implications of providing genetic information — and should provide effective enforcement mechanisms to protect them against data misuse. Privacy concerns about digital, highly sensitive data are important and should not be de-emphasised as a subordinate goal to advancing dementia research. Beyond releasing data in a protected environments, allowing people to voluntarily “donate data”, and making consent understandable and enforceable, we also need governance mechanisms that safeguard appropriate data use for a wide range of purposes. This is particularly important as the significance of data changes with its context of use, and data will never be fully anonymisable.

We also need a favourable ecosystem with stable and beneficial legal frameworks, and links between academic researchers and private organisations for exchange of data and expertise. Legislation needs to account of the growing importance of global research communities in terms of funding and making best use of human and data resources. Also important is sustainable funding for data infrastructures, as well as an understanding that funders can have considerable influence on how research data, in particular, are made available. One of the most fundamental challenges in terms of data sharing is that there are relatively few incentives or career rewards that accrue to data creators and curators, so ways to recognise the value of shared data must be built into the research system.

In terms of skills, we need more health-/bioinformatics talent, as well as collaboration with those disciplines researching factors “below the neck”, such as cardiovascular or metabolic diseases, as scientists increasingly find that these may be associated with dementia to a larger extent than previously thought. Linking in engineers, physicists or innovative private sector organisations may prove fruitful for tapping into new skill sets to separate the signal from the noise in big data approaches.

In summary, everyone involved needs to adopt a mindset of responsible data sharing, collaborative effort, and a long-term commitment to building two-way connections between basic science, clinical care and the healthcare in everyday life. Fully capturing the health-related potential of big data requires “out of the box” thinking in terms of how to profit from the huge amounts of data being generated routinely across all facets of our everyday lives. This sort of data offers ways for individuals to become involved, by actively donating their data to research efforts, participating in consumer-led research, or engaging as citizen scientists. Empowering people to be active contributors to science may help alleviate the common feeling of helplessness faced by those whose lives are affected by dementia.

Of course, to do this we need to develop a culture that promotes trust between the people providing the data and those capturing and using it, as well as an ongoing dialogue about new ethical questions raised by collection and use of big data. Technical, legal and consent-related mechanisms to protect individual’s sensitive biomedical and lifestyle-related data against misuse may not always be sufficient, as the recent Nuffield Council on Bioethics report has argued. For example, we need a discussion around the direct and indirect benefits to participants of engaging in research, when it is appropriate for data collected for one purpose to be put to others, and to what extent individuals can make decisions particularly on genetic data, which may have more far-reaching consequences for their own and their family members’ professional and personal lives if health conditions, for example, can be predicted by others (such as employers and insurance companies).

Policymakers and the international community have an integral leadership role to play in informing and driving the public debate on responsible use and sharing of medical data, as well as in supporting the process through funding, incentivising collaboration between public and private stakeholders, creating data sharing incentives (for example, via taxation), and ensuring stability of research and legal frameworks.

Dementia is a disease that concerns all nations in the developed and developing world, and just as diseases have no respect for national boundaries, neither should research into dementia (and the data infrastructures that support it) be seen as a purely national or regional priority. The high personal, societal and economic importance of improving the prevention, diagnosis, treatment and cure of dementia worldwide should provide a strong incentive for establishing robust and safe mechanisms for data sharing.

Read the full report: Deetjen, U., E. T. Meyer and R. Schroeder (2015) Big Data for Advancing Dementia Research. Paris, France: OECD Publishing.

Individuals often have little knowledge about the actual risks, and single instances of breaches are exaggerated in the media. Key to successful adoption of Internet-based health records is, however, how much a patient places trust in the technology: trust that data will be properly secured from inadvertent leakage, and trust that it will not be accessed by unauthorised strangers.

Situated in this context, my own research has taken a closer look at the structural and institutional factors influencing patient trust in Internet-based health records. Utilising a survey and interviews, the research has looked specifically at Germany – a very suitable environment for this question given its wide range of actors in the health system, and often being referred to as a “hard-line privacy country”. Germany has struggled for years with the introduction of smart cards linked to centralised Electronic Health Records, not only changing its design features over several iterations, but also battling negative press coverage about data security.

The first element to this question of patient trust is the “who”: that is, does it make a difference whether the health record is maintained by either a medical or a non-medical entity, and whether the entity is public or private? I found that patients clearly expressed a higher trust in medical operators, evidence of a certain “halo effect” surrounding medical professionals and organisations driven by patient faith in their good intentions. This overrode the concern that medical operators might be less adept at securing the data than (for example) most non-medical IT firms. The distinction between public and private operators is much more blurry in patients’ perception. However, there was a sense among the interviewees that a stronger concern about misuse was related to a preference for public entities who would “not intentionally give data to others”, while data theft concerns resulted in a preference for private operators – as opposed to public institutions who might just “shrug their shoulders and finger-point at subordinate levels”.

Equally important to the question of “who” is managing the data may be the “how”: that is, is the patient’s ability to access and control their health-record content perceived as trust enhancing? While the general finding of this research is that having the opportunity to both access and control their records helps to build patient trust, an often overlooked (and discomforting) factor is that easy access for the patient may also mean easy access for the rest of the family. In the words of one interviewee: “For example, you have Alzheimer’s disease or dementia. You don’t want everyone around you to know. They will say ‘show us your health record online’, and then talk to doctors about you – just going over your head.” Nevertheless, for most people I surveyed, having access and control of records was perceived as trust enhancing.

At the same time, a striking survey finding is how greater access and control of records can be less trust-enhancing for those with lower Internet experience, confidence, and breadth of use: as one older interviewee put it – “I am sceptical because I am not good at these Internet things. My husband can help me, but somehow it is not really worth this effort.” The quote reveals one of the facets of digital divides, and additionally highlights the relevance of life-stage in the discussion. Older participants see the benefits of sharing data (if it means avoiding unnecessary repetition of routine examinations) and are less concerned about outsider access, while younger people are more apprehensive of the risk of medical data falling into the wrong hands. An older participant summarised this very effectively: “If I was 30 years younger and at the beginning of my professional career or my family life, it would be causing more concern for me than now”. Finally, this reinforces the importance of legal regulations and security audits ensuring a general level of protection – even if the patient chooses not to be (or cannot be) directly involved in the management of their data.

Interestingly, the research also uncovered what is known as the certainty trough: not only are those with low online affinity highly suspicious of Internet-based health records – the experts are as well! The more different activities a user engaged in, the higher the suspicion of Internet-based health records. This confirms the notion that with more knowledge and more intense engagement with the Internet, we tend to become more aware of the risks – and lose trust in the technology and what the protections might actually be worth.

Finally, it is clear that the “who” and the “how” are interrelated, as a low degree of trust goes hand in hand with a desire for control. For a generally less trustworthy operator, access to records is not sufficient to inspire patient trust. While access improves knowledge and may allow for legal steps to change what is stored online, few people make use of this possibility; only direct control of what is stored online helps to compensate for a general suspicion about the operator. It is noteworthy here that there is a discrepancy between how much importance people place on having control, and how much they actually use it, but in the end, trust is a subjective concept that doesn’t necessarily reflect actual privacy and security.

The results of this research provide valuable insights for the further development of Internet-based health records. In short: to gain patient trust, the operator should ideally be of a medical nature and should allow the patients to get involved in how their health records are maintained. Moreover, policy initiatives designed to increase the Internet and health literacy of the public are crucial in reaching all parts of the population, as is an underlying legal and regulatory framework within which any Internet-based health record should be embedded.

Read the full paper: Rauer, Ulrike (2012) Patient Trust in Internet-based Health Records: An Analysis Across Operator Types and Levels of Patient Involvement in Germany. Policy and Internet 4 (2).