Help with school project - ehealth and online cancer communities

Firstly I am very sorry that your grandparents suffered in this way. We moan about the NHS, but I can imagine that back in the old Communist Bloc services were a lot grimmer. Your research sounds valuable but I am wary of opening links, as I have had one bad experience, and have been deluged with spam ever since. Would it be possible for you to let us have sight of the sort of questions you are asking, and in that way we can see whether or not we as individuals could usefully contribute something to your study. With very best wishes for your successful thesis. xxx Penny

Hi Penny,

thanks so much for your kind words! And also thank you for your interest in my survey. Below are the questions that I'm asking. If you do not want to use the website to submit your answers, I would suggest copying the questions with your answers to a Word document or email body, and emailing it my school or personal email (adela.zichova.1@city.ac.uk or adela@ajz.cz). I'll then enter them to a database for you.

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Demographical questions:

- Age group (Under 20; 21-30; 31-40; 41-50; 51-60; 61-70; 71 and above)
- Gender (M, F)
- Length of membership in the online community (Less than 1 month; 1-6 months; 6-12 months; more than 12 months)
- Frequency of usage of the community (Daily; several times per week; once a week; less than once a week)

The following are statements grouped into several categories, each to be answered on a 5-point scale: strongly disagree, disagree, neutral, agree, strongly agree:

Category 1: What Now? as learning environment

- The information provided by the online community is accurate.
- The online community provides me with a complete set of information.
- Information provided by the other members of the community is always correct.

Category 2: What Now? as social support

- The online community shows a sincere interest in solving member problems.
- The experiences of the other community members help me to cope with my own problems.
- The other community members would never consciously give me wrong information.

Category 3. What Now? influencing the public opinion

- The online community is trustworthy.
- I depend on the recommendations of the community members for health service information.
- If I need information about health services, I prefer to find it through the community discussion boards.

Category 4. Participating in What Now?

- I enjoy being a member of the online community.
- I believe that it is worthwhile for me to use the online community.
- I will recommend that other people use the online community.

Category 5. Usefulness of What Now?

- Using the online community enhances my ability to get information from the community members.
- Using the online community helps satisfy my social needs.
- Using the online community enables me to share knowledge with the community members.

Category 6. Ease of use of What Now?

- It would be easy for me to become skillful at using the online community.
- My interaction with the online community is clear and understandable.
- Learning to operate the online community is easy for me.

Category 7. When it comes to customizing products and services to match my preferences

- I prefer to follow my own feelings and opinions, rather than what I find in the online community’s discussions.
- I prefer to follow suggestions of my family and friends, rather than what I find in the online community’s discussions.
- I prefer to follow suggestions of a professional in a given field (e.g., a physician/GP in the healthcare field), rather than what I find in the online community’s discussions.

Category 8. Customizing e-health (online) services with What Now?

- I am very likely to follow community suggestions on using web based electronic health records to communicate with my healthcare providers.
- I am very likely to follow community suggestions on customizing online health tools.
- I am very likely to follow community suggestions on self-diagnosing over the internet.
- I am very likely to follow community suggestions on online monitoring of chronic health conditions.

Category 9. Customizing traditional (not online) health services with What Now?

- I am very likely to follow community suggestions on choosing a healthcare facility to treat my condition.
- I am very likely to follow community suggestions on changing my lifestyle.
- I am very likely to follow community suggestions on participating in clinical trials.
- I am very likely to follow community suggestions on choosing a health/medical insurance plans.

Finally, there is an optional comment field for sharing any experiences, opinions and ideas you may have about using online communities to help you customize health services to match your preferences.

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When I analyze the results, I will be looking for correlations among the categories, and hopefully find links between the aspects of online communities and willingness to customize health/ehealth services.

Thanks again!

Adela

Big thanks to everyone who has participated in my survey! Your feedback is extremely valuable and very much appreciated.

I will keep the survey open until next Wednesday, 6th August. If you'd like to participate, you can fill it out online on my website at:

http://www.ajz.cz/ehealth-study.html

Alternatively, you can copy the questions from a previous message in this thread to Word, and email me your answers to adela.zichova.1@city.ac.uk.

Thanks again!
Adela

I have answered it and I hope you have a good statistical sample of replies.

I did get the impression that you thought this community was about information. While it does share a lot of personal experience, it should never be regarded as officially clinically sound. Cancer Backup is there for that, but a lot of help with how to deal with side effects in the Real World, without resorting to expensive drugs is available to contributors.

It isn't just a gossip emporium, but a place to find friends who have some experience of what you are going through. Sometimes you feel as though you are the only person in the world that this has happened to, and it is a comfort to meet people who understand, and people you can help, because you understand.

Yes, I would endorse what Ruthless says. This is not a part of the Cancerbackup umbrella where we seek medical diagnosis, but I would definitely use (and have done) the main Cancerbackup site for information about my illness - in fact they are THE booklets handed out by my hospital - and there is precious little info given orally, so thank heavens for CB booklets! The What Now site have strict rules about how organisations participate. It is really a social interaction but with the proviso that everyone on here is suffering, or is a carer of a sufferer from cancer, and although we do share "tips", a lot of your questions do not fit the site. I am a ligttle concerned about the weighting of your survey as I do not want this site to get a low score because of the boxes it does not deliberately tick. xxx Penny

Please do not be concerned about this site getting a low score; my research is more about people's perceptions. I took lots of previous research material that addresses online communities and their influence on the members, for example, how communities influence shopping preferences of the individual members. So, I came up with a hypothesis that communities can have an effect on how members customize services. If I take iTunes, I can log in and see how other members (that is, the community) ranked movies and songs, and I can customize my playlists accordingly (if something got a really low ranking, I may not bother watching it or listening to it at all).

The question now is, does this apply to health? It is a private and sensitive topic, and more importantly, the expert knowledge lies with the healthcare professionals. It is quite possible that in the healthcare field my hypothesis will prove to be wrong. I may find out that in this field the community helps members to customize by sharing the tips about where to look for further social support, or which movie or song made others feel better. The customization aspect may very well be related to coping aspect and how to feel emotionally better, rather than to which medicine to administer.

Neither my supervisor nor I have found enough previous research that would specifically address health communities and customization, so we have to research the field by creating hypotheses and then proving them or disproving them. And if my hypothesis is disproved, it will be a perfectly valid contribution for prospective researchers.

Adela

Hi Adela,

I have replied by Private messaging.

Hope you find it helpful...

Best wishes with your Masters Degree

JG

Hi JG,

Thanks so much for your help! I've entered your answers anonymously into my database. I'm really looking forward to analyzing the results, they should be very interesting. I'll post them to this discussion thread.

Best wishes to you, your husband and your family!

Thanks again,
Adela

just done the survey check out my notes about the what now website
tony henfrey

It's brilliant, thanks a lot!

Adela

I would like to send a big THANK YOU to everyone who has participated in the survey. Your kindness is amazing and I am extremely grateful!

I will keep collecting responses until 11pm tonight. For those who would like to participate, here's the link:

http://www.ajz.cz/ehealth-study.html

(The questions are copied in one of the messages above.)

Thank you and best wishes to all!

Adela