Patient communities have played a critical role in how we face disease in our family, but we went through a lot of confusion and anxiety before we found our community. In this article, I explore some ways we may be able to help people move from diagnosis to support more quickly.
We recently had the chance to interview Robin Kingham of the Crohn’s and Colitis Foundation (the CCFA) on the Paradigm Shift of Healthcare podcast. My family and I met Robin here in New Orleans at a Take Steps walk to raise awareness for inflammatory bowel disease (IBD).
When we first found out about my daughter diagnosis of Crohn’s disease, we were scared. We had a lot of medical bills, and we were able to face them only because of our friends and family. Our support group (who knew as little or less about the disease than us) joined us for our first patient community event, and we came in contact with other families facing our same predicament.
At that event, we talked to Robin, and she really helped us create a bridge between our family and the patient community.
Healthcare and Dealing with the Diagnosis
What fascinates me about the healthcare experience here in the United States is that the hospital is equipped to help take care of our physical needs, but many emotional needs resulting from dealing with the physical go unmet. Perhaps the need exists simply because patients do not have a chance to connect with the proper community. If our hospital had some sort of support group for families going through a new diagnosis of a chronic condition, we were certainly unaware of it.
And the question becomes, is the hospital responsible for creating the sort of community? There’s not a direct financial reward for doing so.
I am not saying this is some sort of condemnation of hospital systems. It is just where we are at right now.
The fact of the matter is, there are many patient advocacy groups and patient communities that exist to help other people deal with a variety of conditions. But when that diagnosis comes, there is a void as each person and each family determines how they will handle the new state of their lives.
In bringing about change just in the small company where I work, the details (connecting the dots between all of the needed efforts) create success or failure. We can try a variety of marketing efforts or training sessions, but the integration of the individual effort to the entire system of what we are doing is a company is the critical component.
Patient communities and healthcare systems are managed by different stakeholders, and they have different needs. How can they become better aligned? How can we connect the dots?
What Can Groups Do Now?
In our podcast, we recognize that a lot of healthcare’s issues are BIG issues that need the involvement of the government, a mega healthcare system, or some other large entity to reframe the conversation. That said, looking to the large entities to solve our problems can take away the ownership that we can have to start improving things now.
We can’t just wait for change. We can’t just complain on social media about how things should be better.
Change has to start now with the tools we have.
Let’s take a look at what various groups could do to connect patients to patient communities.
Medical Practices / Hospitals
On the website, a resources page could guide patients to relevant communities. Or, even better, a healthcare organization could arrange content so that patients learning more about various services (say gastroenterology in our case) could look up relevant support groups and communities as a part of how the patient can deal with their condition.
The healthcare organization could also reach out to various patient communities to request printed materials.
Some hospitals have professional patient advocates that can help patients navigate health systems and get the care they need. The patient advocate could also be a bridge to relevant patient communities.
What about support groups at the hospital?
They can be a perfect fit if you have a robust enough patient population facing the same condition. My wife Becca and a few other families tried to get a group going for IBD support, and I really have to give them credit. They stuck with the process of meeting on a monthly basis for a long while, but there just wasn’t enough interest.
I can understand why it would be advantageous for a healthcare system to have their own communities, but re-creating the wheel of patient communities is not always the right move.
One of my first thoughts is to focus on social media outreach, which I do see many patient communities doing. Organic social media (the stuff you don’tpay for) is harder and harder to achieve, but it is possible to build interaction.
PatientsLikeMe does a great job of sharing real patient stories on Facebook. The Crohn’s and Colitis Foundation offers specific support groups for various patient communities affected by IBD, and there are plenty of other groups on social doing great stuff.
Something to keep in mind, as well, is that Google does work with nonprofits for ad grants. This can help nonprofits get search ads, where your ad can show up alongside relevant search results. It can also help with display ads, which includes banners and text ads that show up on a large number of websites. With some targeting, patient communities can get their name in front of a relevant audience.
The last suggestion would be to reach out to hospitals and relevant medical practices. Instead of waiting for the hospital or medical group to show initiative to reach out to patient communities, perhaps the patient communities could create brochures or cards to drop off with the medical groups. If the community focused on creating small print batches of materials, they could easily update them depending on medical group feedback.
Mind you, this last suggestion depends on the reach, the connections, and the level of influence that patient communities can bring to the table.
Still, I believe that each of these suggestions can be implemented, if even at a small level while patient communities continue to build rapport with the necessary organizations.
The point being with all of this is that we can start somewhere. We don’t have to wait for the other group to reach out to us.