Doctor & patient perspectives; Information use in pregnancy; Eating disorders #AECIST20

Yesterday (10 June) was the third and last day of the online conference Information Science Trends: Health Information Behavior, organised by the European Chapter of ASIS&T. As I was presenting I didn't do any liveblogging, but here are some notes on the other three talks that day (the slides of the talk given by me and Dr Pamela McKinney are here.)
The keynote was from Christiane Grünloh on “My Work Tool” versus “My Body, My Data”: Conflicting stakeholder perspectives on digital data access. She started by talking about changes in health-related technology and how that has affected the citizen and the interactions between patient and healthcare practitioner. There have also been changes in the way patients are involved in decision making, making them more equal partners, each partner bringing their own expertise. She mentioned the advocacy for epatients or Dana Lewis, for example.
Grünloh went on to talk about online health records, and specifically the national system in Sweden, which currently has about 3 million people registered. This was the focus for the research she was reporting. The introduction of this system was controversial, in particular with some physicians opposing, although some though it was democratising. Their research was looking into what the concerns of the doctors were, and the perceptions of patients after implementation of ehealth records - revealing contrasting views about what the records were for and who the records belonged to.
The physicians saw the patient records as tools important for their work: they were concerned e.g. about increased workload, patients monitoring doctors' behaviour in viewing records. The patients, on the other hand, were mostly positive about having access, for example feeling that they could communicate better with doctors, and access to records made it easier to follow up things they did not understand.
The researchers explored the findings further in terms of values in design. Considering "ownership and property" the doctors saw the record as their property and their tool to do their work, whereas the patients saw it as their property since it is about them. As regards "Autonomy" the doctors felt they should have control over their work, so they could make the necessary decisions and keep records in a way that made sense to them (rather than writing to be understood by patients). However patients could have the perspective of "nothing about me without me".
The patients' well-being was the doctors' chief preoccupation and they were concerned that this might be compromised by free access to your record: for example that patients might be worried by information without being able to sk immediately for clarification. Finally, there is "accountability and transparency, and privacy" with is associated with issues of trust, with doctors feeling that they will be trusted less and more checked-up-on.
The different assumptions and values of different stakeholders can hinder effective dialogue about these issues. The final message was "it's complicated"!

Following my and Pam's presentation, Paulina Bressel talked about #Recovery of Eating Disorders on Social Media - the extended abstract of her talk is here. Finally the third presentation was Health Information Use During Pregnancy from Carolanne Mahony (presenter), Ciara Heavin and David Sammon (all from University College Cork, Ireland). Using Tom Wilson's information behaviour model, they identified the "information processing and use" part of that model as being under researched and the part they wanted to focus on. They rationale for focusing on expectant mothers was to do with this being an important life event, and literature showing e.g. that expectant mothers combined information when making decisions.
Overall they did a longitudinal study over 18 months, but the results reported here related to the intervews before the child was born. There were 12 interviewees, in which the researchers asked the participants to identify information seeking incidents and tell the story of each. The researchers did thematic analysis, inductive and deductive coding, and the participants were given the analysis to check themselves. The researchers divided the themes into positive and negative impacts, and internal or external use. For example one participant talked about being given a lot of books, and then being overwhelmed and avoiding books altogether (so that was Negative external/behavioural); another was someone looking up physical symptoms online and getting reassurance (so that was Positive/internal).
Big thanks to those organising and moderating the conference, which was really well run and engaging! The team consisted of Aylin Ilhan, Crystal Fulton, Noora Hirvonen, Kaja J. Fietkiewicz, Isabelle Dorsch, Fabian Odoni and Tamara Heck of the ASIS&T European Chapter.

The information worlds of non resident informal carers: stakeholder perceptions #AECIST20

Today, Dr Pamela McKinney and I are presenting at the online conference Information Science Trends: Health Information Behavior, organised by the European Chapter of ASIS&T (Association for Information Science and Technology).
This is our presentation, The information worlds of non resident informal carers: stakeholder perceptions, (embedded below), the references are here and the extended abstract is here.

The information worlds of non resident informal carers: stakeholder perceptions from Sheila Webber

Health (mis)information behaviour in the Covid-19 era #AECIST20

Today is the second day of the the online conference Information Science Trends: Health Information Behavior, organised by the European Chapter of ASIS&T. The keynote talk today is Diane Pennington (University of Strathclyde, Scotland) who talked about Health (mis)information behaviour in the Covid-19 era . Misinformation is not new, but an obvious difference between the pandemic a hundred years ago and this one was the slower rate of mass transmission of information then (e.g. death figures appearing in newspapers then, and in real time on the web now). Pennington highlighted the coining of the term "infodemic" by the World Health Organization, and also the article by Xie et al. in JASIST (Global health crises are also information crises: A call to action - https://doi.org/10.1002/asi.24357) which was written pre COVID but which links the issues of misinformation and health information. She also talked about the seven types of #COVID19 #MisInformation which have been identified in the current work of the Social Media Lab.

Pennington went on to talk about her own work investigating at the authority of information, for example https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3066582/. She explored the concept of post-truth, which doesn't imply that there is no truth, but that people are relying more on their own epistemology, and their own gut feelings and values to judge what is "true". She highlighted the problem of people (like Donald Trump) who manipulate and distract from the real problems and obviously influence those who believe in and trust the non-truth speaker. Pennington cited Lewandowsky et al (https://doi.org/10.1016/j.jarmac.2017.07.008) in saying that a post-truth world"empowers people to choose their own reality where facts and objective evidence are trumped by existing beliefs and prejudices" (p361).
Pennington talked about social media and misinformation (issues such as bots, echo chambers/filter bubbles, the fact that reposting on socal media or adopting conspiracy theories may make people feel better). She also showed examples of people debunking those fighting misinformation, using conspiracy theories. Initiatives such as the WHO myth busters site try to counter this https://www.who.int/emergencies/diseases/novel-coronavirus-2019/advice-for-public/myth-busters and Youtube's misinformation policy
There is a good deal of work examining mis/information about Covid19, primarily concentrating on social media platform. Pennington finished by identifying work for information scientists in terms of research, practice, teaching and service/citizenship (see the second screenshot)

Health Literacy at university level; Information avoidance #AECIST20

Continuing liveblogging notes from the first day of the online conference Information Science Trends: Health Information Behavior, organised by the European Chapter of ASIS&T. Noora Hirvonen gave a presentation based on her ongoing doctoral work, Girls' Positions and Authoritative Information Sources in Finnish Online Discourses on the HPV Vaccine: the abstract is here
Kristin Hocevar and Melissa Anderson (Southern Oregon University in the USA) presented a poster on Teaching Online Health Literacy at the University Level. The library collaborated with the Healthcare Studies programme to develop learning about ehealth, cognitive processing theories and calculating risk; there is information teaching and an assessed project which gets students to find and evaluate information for themselves. This has run twice, the second time (only) with the library input, and evidence was that the students had learnt from the experience.

Gemma Webster and (presenter) Bruce M. Ryan (Napier University, Scotland) had authored a poster on Information avoidance and diabetes: a preliminary empirical study. The focus of this ongoing project is those with type 1 Diabetes. There have been studies on information avoidance, but in the healthcare field the main focus has been information avoidance as regards cancer. The researchers carried out 10 interviews with young adults and 5 health practitioners. Early findings are that healthcare professionals lack the time to support the patients with information. In terms of the young adults with diabetes, findings include going through a period in adolesence where they want to deny the disease; distrust of sources of information and advice; and there is avoidance because future complications (e.g. blindness) are just too depressing. There also seem to be regional differences (even within Scotland) in terms of information and advice available.

Health literacy in practice in Ireland; health information behaviour and e-health services #AECIST20

Today was the first day of the online conference Information Science Trends: Health Information Behavior, organised by the European Chapter of ASIS&T (Association of Information Science & Technology). I will be liveblogging a few of the talks. Extended abstracts of many talks are here: https://zenodo.org/communities/information_science_trends/?page=1&size=20
The keynote Inez Bailey (CEO of the Irish National Adult Literacy Agency) talked about Health literacy in practice in Ireland. She started by explaining the remit of NALA, which includes health literacy, then she defined Health Literacy, situating literacy in social practice. Bailey identified that health literacy is required from the health agencies as well as from individual citizens. She also highlighted the importance of health numeracy as part of health literacy. Bailey presented statistics that showed higher-than-one-might-have-expected levels of poor literacy, numeracy and specifically health literacy. She showed how lower levels of health literacy correlated with behaviours (such as not attending health screening, taking the wrong doses of medicine) which lead to poorer health. NALA has an archive of research here https://www.nala.ie/research/ and aims to bring research evidence to bear in influencing policy.
NALA have developed the idea of being health literacy friendly (see slide, above), with recommendations to practitioners and policymakers of what this should involve, and has literacy-friendly quality standards, including the Crystal Clear quality mark (they found it was easier to get engagement with standrads from pharmacists than with GPs). Bailey went on to give examples of good practice and examples in using language and numbers, to make things easily understood. With food labelling, Bailey raised the issue that some food manufacturers might not want to be totally "plain" in their English if they were trying to make their food seem very healthy....
There were also a lot of interesting questions in discussion e.g. discussing why it is the 18-35 age group who are least likely to ask questions when they don't understand things, asking whether there is evidence that "plain English" writing works better (there is).

The second talk was from Heidi Enwald, Kristina Eriksson-Backa, Noora Hirvonen and Isto Huvila (presented by Enwald and Hirvonen) on Taking health information behaviour into account in user-centered design of e-health services - key findings from an ongoing research project. The extended abstract is here. They were presenting results from the Taking health information behaviour into account project. They are interested in how health information behaviour affects use of technologies associated with health services and information, with particular emphasis on older people.
They did systematic review which was recently published as Older adults’ views on eHealth services: a systematic review of scientific journal articles https://doi.org/10.1016/j.ijmedinf.2019.104031 Key findings were that "Common themes [in the literature] include eHealth service uses, enablers and barriers, and outcomes; eHealth service use can have positive outcomes but also negative consequences; Findings indicate a positivity bias particularly in quantitative studies." Enwald talked about some other findings which have been published: there is a list of publications here http://blogs2.abo.fi/hiba/publications/ In 2019 they did a questionnaire survey and focus groups with older finns, in particular asking about using electronic health records, but they are writing those up at the moment.

Free 3-day online conference: Health Information Behavior

From 8th- 10th June, each day at 2pm-5pm UK time (which is, e.g., 9am-12 noon US Eastern time) there is a free conference Information Science Trends: Health Information Behavior. It is organised by the European Chapter of ASIS&T (Association of Information Science & Technology). You need to register here.
I and Pam McKinney are presenting on the 10th June on the topic The information worlds of non-resident informal carers: stakeholder perceptions and I will post the slides here next week. This is the main programme:
 8th June: Inez Bailey (Title: Health literacy in practice in Ireland); Heidi Enwald, Kristina Eriksson-Backa, Noora Hirvonen and Isto Huvila (Title: Taking health information behaviour into account in user-centered design of e-health services - key findings from an ongoing research project); Noora Hirvonen (Title: Girls’ Positions and Authoritative Information Sources in Finnish Online Discourses on the HPV Vaccine) + 3 posters
9th June: Diane Pennington (Title: Health (mis)information behaviour in the Covid-19 era); Prasadi Kanchana Jayasekara (Title: Usage of social media in finding information related COVID-19); Kaitlin Costello (Title: Correcting health misinformation online: Collaborative crosschecking) + 2 posters
10th June: Christiane Grünloh (Title: My Work Tool” versus “My Body, My Data”: Conflicting stakeholder perspectives on digital data access); Sheila Webber and Pamela McKinney (Title: The information worlds of non-resident informal carers: stakeholder perceptions); Paulina Bressel (Title: #Recovery of Eating Disorders on Social Media); Carolanne Mahony, Ciara Heavin and David Sammon (Title: Health Information Use During Pregnancy)
Full schedule at https://www.asist.org/2020/04/14/67651/ (you need to scroll down the page some way to see the schedule).
Photo by Sheila Webber: Rose, May 2020