8th European Oncology Nursing Society Spring Convention (EONS-8) - Geneva, April 26 - 27, 2012
Internet-based support for cancer patients
Professor Cornelia Ruland – University of Oslo, Norway
Why, in your view, is it important to use the internet for patients with cancer?
The internet is a great way to reach out to patients where they are because patients need support where they are in their homes because there’s only a very, very limited time where they see their providers and they have so many issues, symptoms to manage, concerns, worries, information needs. So the internet is a really great way to help people where they are in their homes.
But the problem is the internet isn’t there to hold their hand, is it, when they find something out?
The applications we develop and have researched, then people can communicate with nurses, with other patients, so they have a social network, they have counselling, they have their support, individualised support.
Can you tell me about those applications? You’ve done research on them, haven’t you?
Like the one application we have that is a tool that patients can log on safely and securely where they can monitor the symptoms and can find advice for what they can do with their specific symptoms, they don’t need to search the whole internet. They can ask questions to a healthcare provider and ask them for advice on concerns. They have and get answers in their homes; they have a forum for a group discussion with other cancer patients which is a really great way of having social support and seeing somebody who understands the situation. They can write a diary. So it’s a really great tool to support them and manage their day-to-day life with all the issues and problems they have.
Do you have to wait for the answer or is there some kind of almost real time interaction?
The way we have done it, people get an answer within 24 hours work days and they know that. So they wouldn’t ask for acute problems but managing symptoms, side effects, things they’re worried, things they might wonder about, if it’s normal or whatever it is. People have lots of questions and concerns at home which they usually need to wait a couple of weeks to find a doctor’s appointment and the doctor’s appointment, usually it’s more medical things that the issues are and there’s really not much time to really address those issues of living on a day-to-day basis with all the pressure and anxieties and issues with the illness.
But having a good computer application is one thing, getting it introduced into the wider community, both patients and the clinician community is another thing. How do you propose to get this in?
That’s absolutely right. The way we have done it when we recruited patients for a study, we did it through advertisement so people volunteered to be used as the Cancer Society’s net site and others. We also have it implemented in our clinic so people who are referred to the clinic get access to it through that way, so that’s also a way of doing it.
How widespread is it at the moment in Norway then?
Not really very widespread. It has been available through studies and now some communities implement it for their citizens and for their cancer populations but it’s usually then through the healthcare system that it’s promoted. We now work together with the patient organisations and give it in their hands so they can spread it out to their users. So it’s not really the healthcare system that is the gatekeeper because useful tools should really be put into the hands of the users directly.
Could such a tool be rolled out internationally, do you think, and become the norm for patients with cancer?
I really hope so because our research studies show really significant effects, that patients have a much better trajectory through the illness, they have less symptoms, less depression, manage their illness better. So it’s really, really helpful, I think everybody should have that.
So should is one thing, how do you recommend the international community of caregivers to go about trying to get things like this?
The system is available, it’s really a policy decision or a decision in the different communities whether they want it or not and that’s out of my hands because it’s really policy decision.
And requiring quite a bit of manpower, quite a bit of human…
Not really. Actually, if you think about that patients can ask their questions from home rather than having to see a doctor, our nurses when we had our study, they spent fifteen minutes a day to answer patients’ messages. People don’t really overwhelm clinicians with messages and questions, but often these questions are really serious and very worrisome for people so I would say it’s really resource saving. Because the patient at home has so many resources in terms of what can I do with my symptoms, which they otherwise might have gone to a care provider, it’s really very resource saving.
And how do you measure that sort of service in with the conventional caring services.
In our hospital patients can use the messaging system into their unit at some units. That also reduces phone calls and all these kinds of things because people can sit at home and write their messages and have the time to do it and are not stressed over whether somebody is on the other end and has time to talk to them so it’s a really great tool.
Have you any objective way of measuring the success of this sort of interaction by computer, by internet?
Yes, we did randomised clinical trials to test the effect of it on patient outcomes in terms of about the quality of patient care when clinicians had, for example, patients that prepared for the consultations but also on the internet in terms of less symptom distress and less depression over time. That was randomised clinical trials, like regular studies.
So what are your conclusions and the sorts of recommendations you might pass on?
I really wish that we could move from the more traditional approach that everything has to be patients see a clinician, have to come to us and we just look at the disease itself and the treatment, there are so many more issues for the patient. It’s the patient’s life and give them more control over their life and ways to handle it that really should have much more focus on healthcare. I think it would really not only improve the quality of care but would really also be more efficient. And patients would definitely get a better life.
Thank you very much.