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Six Examples Of Online Research Communities With Patients

Science Snaps - Dub, online qual and insight communitiesEvery day I get to speak with a bunch of researchers in the health, well-being and pharma space. I ask them about their insight challenges in order to help them develop new strategies to their online qualitative research and online research communities . It’s the best part of my job actually, I love it!

Recently, a lot of researchers in this space have been asking for Dub's help with patient/healthcare communities, so I thought I'd should share and inspire you with examples of past research communities and online studies we've supported.

There are six examples of patient research communities that Dub has supported (below), each varying in size, scope, and intent. Most of these communities tackled hyper-sensitive topics, and all of them talk of what qual researchers do best - uncover the raw emotional experiences and the story behind the data.

Brain Cancer Patients

13 brain cancer patients were engaged in the online research community over a one month period. They were tasked with sharing share their dreams, hopes, theme songs, happiest moments and what advice they would give to others (using either video, images or text-based responses). The picture book tool on Dub's research community platform was utilised for a variety of topics, to help understand psychological/emotional/behaviors associated with the patient journey. One of the really interesting aspects of this project, however, was that for incentives, instead of cash, participants received a book or DVD keepsake which replayed all the positive things they'd shared during the community.

Mixed-cancer research

80 mixed-cancer sufferers kept a diary of their cancer journey over a 3-week period. Participants included the recently diagnosed, those undergoing treatment, those that had finished treatment with/without long-term effects, and finally those in an advanced state or approaching end of life. The overall research objectives were to 1) understand what types of information suffers needed during at various stages of their journey, and how and where they obtained it, 2) gather caregivers’ experiences of living alongside the cancer patient, 3) to explore post-treatment experiences, and finally 4) the patients' feelings and emotions immediately they were informed of being in the 'advanced' state.

Patients entered into an online diary via Dub's online research platform, including details of both typical days and days when their routines and experiences varied.

Cystic Fibrosis Sufferers (UK only)

Around 70 people suffering from Cystic Fibrosis were recruited to take part in an online study lasting 9 months in total. The objectives were to understand and develop content together with participants, with the goal of introducing a new support product for the sufferers of Cystic Fibrosis.

Asthma and COPD sufferers

Over 120 asthma patients kept a journal of their experiences with Asthma over a 6 week period. Participants were asked to share what triggers their asthma attacks, and the online research they do to learn more about and prevent ongoing attacks and ailments. The research team wanted to understand preferences for online portals, and which online patient groups they are aligned with. With this knowledge, the research team then tasked participants with creating ads for their favoured knowledge sources. Over the course of the study, participants talked in general about how they cope with Asthma, and about their diagnosis and treatment plans. Self-management methods and routines were researched, as well as levels of care and support available to them.

Diabetes sufferers

People with Diabetes, over 100 of them in total, were recruited to share and discuss topics included their perceptions of treatment options, daily lives and routines, and forms of medication and therapies. Moderators gathered feedback about conferences relating Diabetes and their value and relevance and sought to discover creditable knowledge sources for Type 2 Diabetics.

Autoimmunities

25 patients with varying autoimmunities including Rheumatoid Arthritis, Crohn's Disease, and Ankylosing Spondylitis shared and discussed their experiences of specialty pharmacies over a 3-day period. Participants were asked to share their treatment medications, dosages and dosing schedules. Participants were challenged to share their best and worst experiences of specialty pharmacy and asked about how they receive their medication and the programs pharmacies offer them in order to make the medication receipt process better. Finally, participants took part in group brainstorming sessions to develop better forms of treatment information, and tested other concepts using the markup tool.

Feel free to reach out to me if you are exploring patient groups or healthcare research, I’d be happy to share more with you and help you achieve your research objectives.

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