Healthcare Online Communities

(will drosos) #1

Hi everyone, my name is Will and I am a student at the University of Georgia. Part of my summer internship is to partner with a local hospital system and assess how they would create online communities for patients with rare diseases.

As I do my analysis, I now understand that Hospitals were designed for Acute Care, and they don’t fit as well with Chronic Care situations. That being said, the patient, the spouse of the patient, the caregivers (primary care, specialists, nurses, psychologist, social worker), and the research community (in the case of more rare diseases) are in need of a sustainable community that would allow all of these different people to connect on a peer-to-peer, non-hierarchical basis.

These online communities would be for people with rare diseases and chronic conditions. Studies have shown that the rate of remission in people with rare diseases can increase significantly by the use of these online communities especially when there’s a robust collaboration.

With this background information in mind, I was wondering if anyone had suggestions or answers for the following questions:

  1. What platform would best accomplish the mission of this community?
  2. What would be a good set of criteria for creating an online community?
  3. Assuming I might not be able to accomplish all of the above criteria, what would be the most important of the criteria mentioned? 
  4. is it realistic to assume that a platform could be mainly self-service versus having to have an IT support person always on the clock supporting the platform?

(Sarah Hawk) #2

Hey Will,
Welcome. Huge project – I’m glad you’ve come to us. :slight_smile:
What are you studying at university?

I’ll answer the parts that I can and then call in some reinforcements.

  1. That depends on many things. Budget, technical support, how important branding is, whether it will be part of a wider site or stand alone. Do you have the answers to those sorts of questions at this stage or are you hoping for general suggestions? This guide to platforms and pricing might be a useful starting point.

  2. Great question. We call that set of criteria the ‘community concept’ and it’s the most important thing to get right if you want to succeed. This webinar on creating a great concept will help. If you have a budget, this resource would be very useful: Community Conceptualisation Framework

  3. I’m not sure that’s something that we can answer. This is a question to put to your audience. You’re unlikely to succeed if you base your community concept off criteria that you think your audience will want. You have to ask them.

  4. Yes. We run this site with next to no IT support. If you run something on a hosted platform, the vendor will do the heavy lifting (upgrades, bug support etc). This comes down to budget again though.

I’m going to call in some people that work in health related communities to give their thoughts. @colleenyoung @BetsyMc @saracarolyn @Dan_CanTeen @Priscilla @Breastcancer_org @KChawla

(Colleen Young) #3

Just a quick note to say welcome Will. Are you working with Hani at the University of Georgia?

(will drosos) #4

(will drosos) #5

Hi Colleen,

Actually no, unfortunately, I don’t know that person.

(Sarah Hawk) #6

No problem at all. Did you get a chance to check out the platforms link? That literally lists the options all the way from free up to enterprise.

Then this page has examples of different communities on specific platforms so you can see how they can look.

Have a browse through those and then I can answer specific questions that you have (or call in vendors to answer them when appropriate).

(lindsaymstarke) #7

Hi Will,
I suggest chatting with the community team at Health Union–this is very similar to their mission! Here’s a great podcast with Jenn Lebowitz, who is fabulous.

Hawk covered most of your questions wonderfully, but I did want to elucidate #4 a little bit–in the guide that she shared, many of the software platforms are Software-as-a-Service so shouldn’t require much IT work, but I do tend to find communities are more successful with dedicated community managers. In other works, you don’t need someone to maintain the technology, but you do need someone helping to facilitate the community.

I hope that helps–this sounds like a wonderful project, and I wish you the best of luck (and go Dawgs).

(Sarah Hawk) #8

100% agree.

(will drosos) #9

Sarah and Lindsay,

Thank you both so much! I’ll look at all of the links both of you gave me. Your advice has been so helpful. Go Dawgs! That’s very impressive that you know that haha.

(Sarah Hawk) #10

I’ll be honest – I have no idea what a dawg is. A dog?

(Richard Millington) #11

sounds like one of them local sports teams…

(Priscilla McClay) #12

Hi Will,

I manage an online community for a hospice charity in the UK and I’ve previously worked on a cancer support community, so happy to advise where I can.

The fact that these are rare diseases obviously means that you have a relatively small potential audience to build a community with - does the hospital that you are working with already have some channels for reaching these patients/carers? That would be really useful for finding and engaging with your early adopters.

As part of your research, consider checking whether there are already Facebook groups out there for any of these conditions, or whether that might be a route you could consider? I am not an expert in this area, but I believe that there are quite a few Facebook groups out there for rarer conditions, I suppose because there is already such a massive audience on Facebook. (There are other discussions on this site about Facebook groups vs your own platform if you want to read up on the pros or cons of each.)

For any healthcare-related community, it is particularly important to have your moderation and safeguarding processes in place, as you will be dealing with sensitive content and potentially vulnerable people.

Those are just some initial thoughts, but let me know if you have any questions.

(will drosos) #13

Thank you, Priscilla, I’ll look into that. My impression was that the hospital wanted to create a community separate from Facebook. I can always go back and check with them though.

“Go Dawgs” is a phrase used by University of Georgia graduates, students, and fans. The mascot of the University of Georgia is a bulldog, and “Go Dawgs” has become a shortened version of “Go Bulldogs”.

(lindsaymstarke) #14

I’m from Atlanta, and born to a family of UGA fans. :slight_smile:

(Priscilla McClay) #15

Yes, they may well prefer a non-Facebook community - giving users anonymity and owning all the data yourself are big advantages here. Ours is an own-platform community for similar reasons, plus it gives you more options to be structured (sub-groups, etc) and searchable.

(John Prusinski) #16

Hi Will,
I manage an online community for mental health professionals; patients and families are not included in my audience, so I have different issues than you will, but one thing I expect we have in common is that in healthcare one of the most important criteria you’ll need to address is HIPAA compliance. You can definitely run into problems if you can’t guarantee the privacy of any patient-related healthcare information that gets transmitted in an electronic medium.

(Sarah Hawk) #17

Hey @willdrosos
How are you going with your research?

(will drosos) #18

Hey Hawk,

My research is going well! I gave a report to my boss and he seemed to like it. Hopefully, the hospital will find it helpful.

(Liz Crampton) #19

Hi Will,

Interesting project! I run a mental health community in the UK. I had a couple of thoughts;

  • You’re connecting a variety of people! I’d research how patients feel about being connected directly with practitioners. In mental health for example, a lot of our members have had negative experiences with clinical staff and believe they are health experts in their own right (which of course they are). So, I’d consult them and consider having a ‘patients’ only area where clinicians can’t access and/or have patients be anonymous. If that’s not going to work, ie if clinicians/doctors etc. explicitly want access to patients, I’d test the waters first.

  • Are you going to separate by condition/diagnosis?
    Again, we’ve avoided doing that but there’s possibly more cross-over with mental health than physical in terms of multiple diagnosis. Our members haven’t wanted diagnosis-specific chat rooms per se, so again, I’d research that before you design your architecture. This may be unique to mental health and members not wanting to be ‘defined’ by diagnosis but could be echoed with rare diseases/chronic conditions.

Good luck!