The Unknown Unknowns: Crowdsourcing Research Through Social Media

In this guest post, Marie Ennis-O’Connor (captured above by the cartoonists at our recent Symposium) argues that patients are the most under-utilised resource in healthcare and challenges researchers to start filling the knowledge gaps and working towards better health outcomes by involving patients.

When I was asked to give a talk at the recent Cochrane UK and Ireland Symposium, I turned as I so often do, to my online community of patient experts. For whom better to guide me to the heart of the subject matter of my presentation – making research more accessible, understandable, and prioritized to patient needs – than those patients themselves. With the support of Colleen Young, founder of #HCSMCA – a weekly health-related Twitter chat whose participants span a diverse range from patients, to researchers, to healthcare professionals – I moderated a tweet chat which explored the issues that are most important to patients and those who care for them.

patients talking

Patients must be involved in research. We don’t know what we don’t know

Assumptions are made every day about patients – assumptions which may lead to a failure to deliver optimum care. When these assumptions extend to research, quite often there is a mismatch between the questions that patients and their doctors want answers to – and the ones that researchers are investigating. As an example, the research priorities of patients with osteoarthritis of the knee and the clinicians looking after them, were shown in a study 1 to favour more rigorous evaluation of physiotherapy and surgery, and assessment of educational and coping strategies. Only 9% of patients wanted more research on drugs, yet over 80% of randomised controlled trials in patients with osteoarthritis of the knee were drug evaluations.

To quote Donald Rumsfeld, “There are known knowns. These are things we know that we know. There are known unknowns. That is to say, there are things that we know we don’t know. But there are also unknown unknowns. There are things we don’t know we don’t know”. So how might researchers better address this knowledge gap in order to make their findings more relevant and prioritized to patient needs? During my talk, I answered this question with a quote from Sarah Chapman:

“When it comes to managing a health condition, how do we know what matters most unless we ask those living with it? Knowing what matters most is vital for good stewardship of our finite resources to fund research, ensuring that work goes into seeking answers to questions that patients most want answered.”

It’s important that patients frame the research question. Historically researchers have framed questions which are not particularly relevant to patients. Patients, and their carers, should be included in the review process at this early stage, and right throughout the review process.

“If a patient/consumer group don’t review your proposal you might miss that one important outcome measure. Many researchers are fascinated by P-values and statistical significance. In clinical research, the Patient is the only P we should be evaluating.” Pete Carr, Cochrane Reviewer and vascular access researcher. Here’s more from Twitter:

HCSMCA1 tweet

hcsmca2 tweet

hcsmca3 tweet

 

Including patients in the review process is so much more than a tick-box exercise. Patients are the most under-utilized resource in healthcare. While doctors are experts in the disease, patients are experts in how the disease affects their lives. Learn from them.

Learning, which has always existed as a social process, is enhanced by the new social connectivity that cuts across barriers of time and space. New horizons are opening up through social media for the mutual sharing of knowledge and the identification of knowledge gaps.

hcsmca4

 

hcsmca5 tweet
Researchers have a responsibility to communicate findings so that people know why and how evidence should be used to inform their health decisions. We are moving from a passive model of research dissemination – providing access to findings, but relying on potential users to find the information themselves – to a more active model, which views people as active change agents, rather than passive recipients of information. It is not enough to make findings available through open access and expect that people will come and find it; researchers have a duty to get the relevant findings to the people who need it most. Social media offers an adjunct to traditional dissemination methods, in ways that can be more easily accessible and understood by the public. Furthermore, social channels provide direct access to patients willing and eager to engage in the research process. The foundation of collaborating in a social era is built on connection, communication and participation.

social era

http://www.oscarberg.net/2014/11/the-collaboration-pyramid-revisited.html

Share what you know, learn from those who know what you don’t yet know and together tackle the unknown unknowns. Every day patients and their carers go the extra mile to help make a difference to the lives of others.  They are demanding better evidence, better presented, better explained, and applied in a more personalised way. We need to truly understand that health expertise lies outside as much as inside medical circles and that working alongside patients will bring the best outcomes to healthcare.

I concluded my presentation with a challenge prompted by this Twitter exchange.

hcsmca6 tweet

 

And so I ask of you dear reader, are you up for the challenge?

Links:

  1. Tallon D. et al. Relation between agendas of the research community and the research consumer. Lancet 2000 Jun 10;355(9220):2037-40.

A Storify of tweets from the #HCSMCA chat can be found here.

You can view the slides from my Cochrane UK and Ireland Symposium here and Sarah Chapman’s Storify of tweets from the symposium is here

 

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Marie Ennis O'Connor

About Marie Ennis O'Connor

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Stanford Medicine X e-Patient scholar, Marie Ennis-O’Connor is an internationally recognized speaker on participatory medicine - a model of medical care based on a collaborative relationship that includes the patient, the healthcare team, and clinical researchers. Marie is a board member of Europa Donna Ireland - The Irish Breast Cancer Campaign, a patient advocacy group that is one of 46 member countries across Europe. She authors the award-winning blog, Journeying Beyond Breast Cancer, one of the most widely-read cancer survivorship blogs, reaching a global audience of patients, researchers, and healthcare professionals. Other publications include a patient-information resource on breast cancer and fertility, and journal articles on social media and cancer care. Marie is currently working on a project to produce ethical guidelines for researchers who wish to use social media in their research. You can follow Marie on Twitter @JBBC

3 Comments on this post

  1. […] recently gave a talk at the Cochrane UK and Ireland Symposium on the topic of empowering patients through making research findings openly available to them. […]

  2. […] was excited after reading a blog post by Marie Ennis O’Connor “The unknown unknowns: crowdsourcing research through social media” (May 8, 2015). O’Connor argued for the importance of making patients central to the process […]

  3. Kit Byatt

    Thanks for getting this debate going with an excellent ‘worked example’!
    It’s important to remember that the Venn diagram of patients and researchers/doctors has a significant overlap. There are several such people who are active in Twitter, not least @GrangerKate and @Liz_ORiordan.
    I suspect this ‘overlap group’ offers a really important catalyst for the process of engagement; perhaps some research on how best to identify & recruit them might be fruitful!

    Kit Byatt / Reply

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