New Media Med Blog

Hi

We’ve developed a patients’ social networking community using ning and we are putting together an application to have it approved by the ethics committee in the hospital. It will be a closed community which is only accessible to those who suffer from a particular condition and are being treated in a particular hospital. 

I recently completed the application for the hospital ethics committee so I thought I’d share how I did it for anyone else who is going through the same process of getting a social networking site approved by a hospital ethics committee.

Here are some guidelines:

In order to complete the application to the hospital ethics committee we had to submit a research protocol which describes exactly what the pilot study would do. It needed to include our methods of observation and what analysis we would do. I found a useful document on writing a research protocol in here.
It covers all the possible ethical considerations so it was useful as a checklist for all the possible issues which might arise in the review with the ethics committee

Also I drew on past studies of the use of social networking sites in healthcare situations:

Learning from e-patients at Massachusetts General Hospital

An Online Communication Tool Alters the Way Patients Find Information

Here are recommendations for running a healthcare forum

For anyone else going through the same process these are very useful resources.

Today, healthcare is made up of a myriad of heterogeneous systems which need to be linked together to improve doctor-doctor, doctor-patient and patient-patient communication.  In the past 10 years, many industries such as banking, travel and entertainment have been transformed by using Information and Communications Technologies (ICT). A similar transformation is happening in healthcare because of the political pressure to improve health services for an ageing population. For example, in Ireland the system is being re-organised and Electronic Health Records are seen as being safer for the patient and more efficient for the overall health service. There is a plan to adapt Neurolink for use by oncologists to communicate electronically with GP’s. The question is “Will the GPs use the oncology referral service?”

I attended a Parkinsons Disease support conference recently and one of the presenters, a doctor, had a lot in his presentation about the way forward was a patient centric approach – especially since Parkinsons means that you need care from multiple disciplines. I asked him what patients’ organisations could do to make the system more patients centric and his answer was that we need more doctors. To me, that didn’t sound more patient centric. In fairness to healthcare practitioners who are usually continuously trying to improve efficiencies and get more out of the day, it is natural for them to see the solution as “more doctors”. But there is a shortage of doctors already and in the next two decades as emerging countries such as India and China beef up their middle classes, the western world will face an even bigger shortage. I replied that because of the health cuts here in Ireland and the shortage of doctors worldwide, it didn’t look like we were going to get more doctors. His solution was that we should agitate for more doctors. Wouldn’t it be much better for patients’ organisations to just get out there and form a community and arm themselves with information and start to help themselves more rather than relying on a cavalry of doctors appearing over the hill at the last minute? Patients who live with chronic diseases know a lot about their disease and the combined knowledge of a crowd of patients would be far greater than what one person can know. So a community where people share information is invaluable not only to others with the same condition, but also to the medical professionals who care for them. This is what Health 2.0 is all about.

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