Natrice Rese (@natricer) and I (@anetto) have had various types of experiences with patient support services, both large and small. Here is an outline of the topics we will explore this week on #hcsmca, Wednesday, June 18 at 1:00pm during the weekly tweetchat.
There are patient organizations for almost every illness. Their purposes include promoting awareness and providing information about the disease. Many also provide support services and help patients and families connect with other people like them. Many patient organizations also advocate for improvements such as better treatment, access to medications and more research funding.
There are patient organizations for almost every illness. Their purposes include promoting awareness and providing information about the disease. Many also provide support services and help patients and families connect with other people like them. Many patient organizations also advocate for improvements such as better treatment, access to medications and more research funding.
There are patient-led organizations, such as The Sjogren's Society of Canada, EmanuelSyndrome.org or FMDchat.org and others that were founded by medical professionals, such as the Canadian Diabetes Association, the Canadian Cancer Society or The Arthritis Society as some examples.
A major benefit of this type of organization is that you can self-refer, that is, you don't need a doctor's referral to get the benefit of education and help from them. I have been a recipient of in-person services from The Arthritis Society. Meeting others with the same issues as mine in self management courses has been valuable. The advice and help of physios and occupational therapists is also irreplaceable.
Later I discovered a self management course offered online which is based on research done at Stanford University. Many self management programs owe a debt to this research from the 80's. It is still going strong and people with chronic illness can enroll in it here Better Choices, Better Health.
In-Person Support services
Increasingly patient organizations are augmenting their communication and support services with electronic solutions - eNewsletters, webinars, e-learning, video, online communities, chats and other social media platforms. In some cases, organizations have chosen to replace in-person services with online delivery. The internet offers great opportunity but there are limitations to online means of communication. Obviously, if money were no object, offering both online and in-person services would be the perfect solution.
Online support services
For rare diseases, online is often the only way to connect with others who have the same health issue, but organizations serving more common conditions may be neglecting some segments of their patient group by moving services to online only. Some patients and families with no computers or ability to use them. There are many people in this category including the poor, those with language difficulty or with low literacy. Some prefer not to use online services because of privacy concerns and/or a fear of social media.
A major benefit of this type of organization is that you can self-refer, that is, you don't need a doctor's referral to get the benefit of education and help from them. I have been a recipient of in-person services from The Arthritis Society. Meeting others with the same issues as mine in self management courses has been valuable. The advice and help of physios and occupational therapists is also irreplaceable.
Later I discovered a self management course offered online which is based on research done at Stanford University. Many self management programs owe a debt to this research from the 80's. It is still going strong and people with chronic illness can enroll in it here Better Choices, Better Health.
One thing all of the charities have in common is a need for funding to carry on their good work. In times like this when money is scarce and the organizations have to make hard decisions how do they continue to meet the needs and demands of the patients they serve?
Increasingly patient organizations are augmenting their communication and support services with electronic solutions - eNewsletters, webinars, e-learning, video, online communities, chats and other social media platforms. In some cases, organizations have chosen to replace in-person services with online delivery. The internet offers great opportunity but there are limitations to online means of communication. Obviously, if money were no object, offering both online and in-person services would be the perfect solution.
On June 18th, #hcsmca will explore the complexities of choosing between online vs. in-person patient support services when organizations can't afford both.
- T1: Is it ethical to opt for online only delivery of patient education and services?
- T2a: What services are better delivered online and which in person and for whom?
- T2b: Is online delivery of services actually cheaper?
- T3: Share an example of quality and cost-effective online support systems for patients
Additional Reading
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