Interview with founder of “I have breast cancer” project
Today on Journeying Beyond Breast Cancer, I interview Andrew Spong, PhD, on the launch of his latest project “I have breast cancer”.
JBBC: Andrew, I am interested to learn more about your project “I have breast cancer” – can you tell me what it is about and what you hope to achieve with it?
A.S. Hi Marie. Thank you for having invited me to say a little more about the ‘I have’ project, and the proof of concept publication, ‘I have breast cancer.’ Just before the Christmas break, I was reflecting on the fact that the posts that attract the most traffic and responses on my website are invariably those which have titles that pose or answer questions.
I’m no search engine optimisation (SEO) wizard, but it would appear that Internet users are entering natural language questions as search terms with increasing frequency. If you enter ‘do I have’ or any other interrogative to explore the sort of top results that Google suggests on the basis of previously entered terms, you can see how many of these are health related.
Unfortunately, whilst search engines are very good at aligning requests with results, the likelihood that the top results are also that which provide the very best patient facing, outcomes oriented, best evidence driven, reliable, relevant and accessible health information.
In other words, when we ask ‘what is the best health information available on the Internet?’, what we are actually asking is: ‘what health information are we most likely to find on the Internet?’
At this point, the ‘I have’ project is a small-scale experiment to see if this state of affairs cannot be reoriented. Its objective is to create a series of very short (literally one or two pages) pieces of high quality information that will appear on the first page of Google, Bing and Yahoo results when search terms such as ‘I have breast cancer’ are entered. These publications will offer perspectives informed by leading healthcare professionals, patient advocates and expert content curators to provide a simple, plain language introduction to treatment options, resources, communities and other signposting resources.
JBBC: What value does crowd-sourced information have in patient communities?
A.S. From my perspective, newer patient communities such as PatientsLikeMe or CureTogether and longer-established bodies such as ACOR are doing an outstanding job of bring those who are expert in living with and managing disease together, namely the patients themselves.
Ultimately, such value as the community is able to confer to its membership is entirely contingent upon the authority of the crowd. It is the ‘I have’ project’s objective to engage the interest and support of those healthcare professionals, patients, and curators who are committed to driving the very highest quality information available to the forefront of Internet search.
JBBC: Do you envisage people using your site to establish their symptoms prior to going to a doctor, or is it aimed more at post-diagnosis support and information?
A.S. As it was originally conceived – and I must stress that we are still at the proof of concept stage at present – I think the post-diagnostic intention of the project is framed within the present perfect form in which it is expressed: ‘I have.’ We have all been touched by breast cancer in some way or another, and whilst I was neither thinking of those whom I have lost to the disease nor those who are currently receiving treatment for it, I did try to imagine someone returning home from a consultation during which they received the news that they had breast cancer, sitting down in front of their computer, and thinking ‘now what?’
JBBC: Do you hold to the patient as a consumer model which seems to be more common in the US than Europe? And do you think we are moving any closer to this model here?
A.S. Personally, I baulk at the idea of the patient as consumer. Patients are unwilling customers. Rather, I advocate and fully support the idea of the patient and their healthcare professionals as co-creators of their care, sharing in the making of decisions in an open, transparent and fully participatory way. I appreciate that this is still far from the average patient’s experience of how healthcare services are delivered. However, I think that there are many ways that those of us who are involved in the health conversation external to that which takes place at the point of care can still make a positive contribution towards the patient experience by doing what we can, where we can. In the case of the ‘I have’ project, this means conveying high quality information a in a findable context and a usable format.
JBBC: Do you think that online health searches affect the decision making process for patients?
A.S. In as much as that the information we find when searching has the potential to affect outcomes as well as opinions, then I would say yes, that is so. The source has to recognised as trustworthy, credible and authoritative, and that affirmation is best served through recruiting contributors who own credentials can be verified elsewhere on the Internet, and through the high quality information they curate and disseminate through the ‘I have’ publications I hope that they will contribute to.
JBBC: Would you agree that too few health information seekers check the sources of their findings online? How can we educate a more digitally health-literate citizenry?
A.S. Excellent repositories of data such as that maintained by Susannah Fox of the Pew Foundation are building across the Internet that suggest that yes, this is unfortunately often the case. The ranking of results on health subjects by search engines is too often interpreted as a signifier of authority rather than simply the outcome of an algorithm. In time, the collecting, collating and harvesting of the so-called ‘Big Data’ that the patient-reported information of the Social Web and the plethora of health-related conversations that platforms such as Symplur help us discover and understand may overcome this state of affairs. However, the variable health literacies and competencies of the present lead us to moot that the best way of helping those seeking the highest quality health information on the Internet is to make it the easiest to find.
JBBC: Do you think more physicians should establish an online social media presence? How can we encourage them to do so?
A.S. Whilst it is not always easy to discern the progressive, committed healthcare professionals from the media-manipulators on the social web, there are already a number of professionals providing superb examples for current healthcare professionals and the next generation alike. As syllabi are reformed and the participatory medicine is embraced by doctors and patients alike, in the meantime individuals such as @hjluks @Doctor_V @drmikesevilla @SeattleMamaDoc @kevinmd
@amcunningham are leading by example. They are keen to share what they have learned, and I curate many of their strategic communications plans for establishing and maintaining a portfolio of presences across the social web here and here.
JBBC: What are your long term plans for the I have project. You are at the start up stage now but how do you see it developing over the next few years?
A.S. If the ‘I have’ project progresses beyond the proof of concept stage, clusters of publications will be released by disease classification on a monthly basis. New projects will be added to the ‘I have’ project publication directory and plan. This open document is now live, and ready to accept suggestions for future publication under the ‘Proposed projects’ tab at the bottom of the spreadsheet.
JBBC: It’s been a fascinating discussion Andrew, thanks for taking the time to let us know about your new project and we wish you all the very best with your future plans to grow it.
A.S. Thank you for inviting me to take part in this interview.
Got a question or comment for Andrew related to the I have breast cancer project or any aspect of health care social media? Then please share it with us below.
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thanks for sharing such an intelligent and thought provoking interview with Andrew. Its a fascianting topic indeed.
Sounds like a very interesting project
Social networks have great potential for crowd sourcing information and if handled right, have a lot of value to offer health care organizations
Andrew is right to highlight the power of orgs like Patients Like Me and Cure Together sites like these can be a great force for aggregating patient information in the future.
The opportunity to share resources, advice, and encouragement is something that can be incredibly empowering for a cancer patient and so anything that facilitates this in a responsible way is is to be welcomed
Doctors should go online if that is is where their patients are seeking out information. We need the benefit of their professional experience and they need to act as a counterweight against the incorrect and misleading information that is on the web.
Great interview – and some great links for me to follow up on. I was aware of KevinMD on Twitter but not the other docs – looking forward to checking out their profiles
As a breast cancer survivor with a wealth of informationa and a desire to help – how can I get involved with this project?
Just wondering if Andrew or you Marie has read Eric Topol’s topical new book, “The Creative Destruction of Medicine”? And if so what you thought of it? I am considering buying it but wonder if it will speak to me as a patient or is it just for physicians? Thanks for a great interview
My question is how does this project decide who is qualified to add to the information? I looked at the google docs link and I am still a little confused about the concept..or is that just my chemo brain talking?
Is this what is meant by peer-to-peer health colloboration? I have been hearing a lot about this lately, but wasn’t quite sure what was meant by the term.
Not just a great interview and some real food for thought here Andrew and Marie, but I also really appreciate the many wonderful resources sited for patients and medics alike, some of whom I am already following on twitter and others I am looking forward to following and learning more about this fascinating topic.
What a fantastic community this is! Such a plethora of responses. Thanks for having taken the time to read my responses to the questions that Marie posed, and for your comments.
Dorothy – please, just add whatever you’d like to the document linked to in the body of the post
Siobhan – it’s on my slush pile. I’ve heard good things, too.
Ann – thanks for interrogating this. It is my intent that these resources should feature gold-standard, evidence-informed, patient-facing, relevant, reliable, accessible info, not ’eminence-based medicine’, or ‘opinion’ by any other name. If the information contained does not meet those standards, then I’m looking to other contributors to challenge, correct and improve it.
Jane – peer-to-peer health collaboration, participatory medicine, co-creation of care… yes, reforming the doctor-patient relationship has a lot of names 🙂 http://e-patients.net/ is a great place to go for clarification. Even Wikipedia has a pretty good definition of the epatient (empowered, equipped, enabled etc…. not ‘electronic’ ;)) these days.
Thanks again, everyone. I look forward to following you on Twitter.
Very thoughtful and intelligent post – a lot of things I hadn’t considered and this gives me a real incentive to think more about e-health
A lot to digest here – thanks for posting such a great interview. Going to explore these resources that were mentioned to learn more
I loved this interview, Marie. Very fascinating and forward-thinking. My question to Andrew is how malpractice concerns play into many physicians’ reluctance to embrace a social media presence. The U.S. in particular proves to be an increasingly litigious culture, and I wonder how that plays into the whole idea of a complete medical online presence. Thanks!
Another one of your great interviews Marie. I totally agree with the co-creators idea and even a must if you are to ensure you get the best care which is in line with whatever restrictions health wise you have to contend with. I’ve eventually been able to achieve this and it brings such peace of mind.
Outstanding interview. I appreciate your ongoing efforts to educate and motivate!
Thank you all for taking the time to comment on this interview with Andrew – I really appreciate your input.
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