Sunday, October 10, 2010

Online forums for heart patients and health professionals

I have been asked this question.

I am thinking that I should set up a Facebook forum for health professionals and heart patients. I welcome your suggestions in joining forums dedicated to heart health professionals and patients.

I have been thinking about my answer and although I do not know of any examples of forums that currently exist, I have come up with a couple of questions I think it is important to consider before setting up a forum like this.

1. What focus will your forum have? Is it social support forum, or more a "ask the doctor" website? If you are unclear what your forum is about, you may find it difficult to attract participants.

2. Are you the right person to set up this forum? By this question, what I mean to say is...online forums often come about because of a perceived need...it has an organic conception and growth. If you decide to manufacture a forum or community where there is no need other than your own, then it will not be successful.

3. Is there a need for your forum? Is there one already up and running that you could hook into? There is no point trying to set up a forum if there is already a very successful one achieving the goals you are interested in.

4. If your forum is a "ask the doctor", how will you moderate the information given? How will you ensure the information given by the health professionals is correct? How will you attract health professionals to take part? The last thing you want to do is be a vehicle for mis-information.

5. Who will drive the forum...lead it...moderate it? Successful forums are usually organic but they do need people to 'lead' them. Have a look at my recent post in which I talk about how to set up online communities.

6. Is it appropriate to have a mix of health professionals and patients? Will one group over-power or disadvantage the other? I guess this comes back to the aim of your forum...what you are wanting to achieve. I think it would be appropriate to do some market research...to talk to people to find out what they want and what they'd be prepared to give to the forum.

7. How will you manage issues of confidentiality? It is vital that patients are not compromised in any way. And health professionals have various professional and statutory regulations they will need to follow, so it is important that your forum recognises this.

8. Is Facebook an appropriate platform for a forum in this area? Would a closed email group be a better option? What are the advantages of using Facebook? As I have said only very recently in my post about what tools to use for setting up online communities, Facebook is a great networking tool because so many people are using it. However, confidentiality can be difficult to maintain in Facebook but again, it depends on what you are wanting to achieve in this forum.

Do you know of any online communities or forums that already exist for heart patients and health professionals? Or, do you have any advice or comments about how to set up forums for patients, health consumers and health professionals?


Image: 'Happy Valentine's Day'
http://www.flickr.com/photos/53611153@N00/470473931

4 comments:

Anne Marie said...

We had a great discussion about patient organisations and Facebook here:
http://wishfulthinkinginmedicaleducation.blogspot.com/2010/08/paying-for-privacy-patient.html

Sarah Stewart said...

Thanks for this, Anne Marie...this is a great post which discusses many of the questions that I have raised here.

starpath said...

Hi Sarah
Here are some examples of social networking sites in health and also some platforms or frameworks that have been used.

Example using Facebook
Breastfeedingnz
This Facebook page has been initiated by the Ministry of Health to promote breastfeeding. The campaign is professionally run by an advertising agency and is drawing and engaging women who are commenting, sharing experiences, encouraging and advising other breastfeeding women. Posts to stimulate discussion are initiated by a named person (Lucia) who also runs the linked blog and Twitter posts. Besides the Facebook wall page, the site has tabs for photos, discussion, videos, events trivia and links.

PatientsLikeMe
PatientsLikeMe is a social networking health site that enables its members to share treatment and symptom information in order to track and to learn from real-world outcomes. There are currently 9 disease categories and this number will increase. Patients report on treatments and practices they have found helpful.

Example using the Ning framework
Wego Health
A community built on the Ning framework with discussion forums, groups, pages etc.

Drupal is a flexible open source platform that can be used for networking, sharing knowledge and communicating. It can handle a large user base and is widely used.

Sharepoint is a Microsoft Office server is an integrated suite, providing content management and information sharing.

IBM WebSphere is a brand of software products designed to operate and integrate applications across multiple platforms

vBulletin is a content management designed to easily create content and cross-publish between forums, blogs and sites.

Chris Paton discusses issues around setting up a social network for health groups with their particular requirements. His slideshare presentation is here:
http://www.slideshare.net/chrispaton/online-communities-workshop

Sarah Stewart said...

Thank you, Starpath...you are brilliant :)