Smart Patients

Frequently Asked Questions

Table of Contents

Introduction

What is Smart Patients?

Smart Patients is an online community where patients and caregivers learn from each other about treatments, challenges, and how it all fits into the context of their experience.

Is the site for caregivers, too?

At Smart Patients, the term “patients” includes family members and friends, patient advocates, and survivors who use our website on behalf of patients. They are all part of the patient community.

What illnesses does this site cover?

While we started with a focus on oncology, we've been humbled with interest from many other communities and we're now also working with people affected by many different illnesses. You can review the list of our current communities here. If your illness isn't listed and you'd like to collaborate with us to build a new community, please let us know by writing to info@smartpatients.com.

What kind of issues can we talk about here?

Your illness, treatments and side effects, where to find help, how to cope with disease, clinical trials, research into disease and treatments, prevention, recurrence, end of life, grieving, and related topics are all important topics members can help each other with. Some general-interest discussion is okay, but it shouldn’t overshadow the main purpose of the site.

What kind of issues can’t we talk about here?

Don’t be rude, abusive, or obscene. No partisan politics. No trying to convert people to your belief, religious or otherwise. No advertising, marketing, selling, or fundraising. No surveys or research projects except in collaboration with the Smart Patients team and with their explicit permission. Don’t break copyright laws. Don’t be disrespectful of people. We may delete comments or block members who break these rules, as explained in our Terms of Agreement.

Is there advertising on the site?

No advertising, no marketing. Not by us, not by you.

What does it mean to be a Smart Patients member and is there any cost to members?

Anyone who registers to use the Smart Patients website is a member. There is no charge for membership.

How do you make money?

This is such an important topic that we cover it in detail on its own page here.

Is this meant to replace doctors?

No. What you learn at Smart Patients can complement what you learn from your health care team and inform questions that you might discuss further with them. We’ve found that patients and caregivers with a serious diagnosis -- especially a rare one -- often become extraordinarily knowledgeable about it.

As Tom Ferguson said more than 10 years ago:

“Patient-helpers ... will typically know only about their one disease, but since they can devote a great deal of time to it, their knowledge within that single narrow niche can be impressive.”
Our goal is to help more patients get better care by learning from each other.

Privacy

What about privacy?

If we don't get privacy right, we will fail in our mission and our business. We’ve worked hard to develop a privacy approach and a Privacy Policy that protects and respects our users. The policy spells out how anonymous information may be gathered and used. Please take a look at the Privacy Policy and the related Terms of Agreement, and let us know what questions you have about it.

What kind of information do you share with partners such as medical centers or pharmaceutical companies?

We may share anonymized data from surveys, conversations, or use of our website. This is such an important topic that we cover it in more detail on this page. We use HIPAA guidelines to eliminate identifiable information, which means that names, locations, email addresses, and other identifying information is removed.

What do you mean by “anonymous” information?

We take seriously our responsibility to only share anonymous information. Before sharing any of our members’ information, we remove identifiable information, including names, locations, email addresses, and other identifying data. We make sure any information we share meets or exceeds a federal standard for “de-identification” set by a medical privacy law called HIPAA, even though we are not subject to that law. You can read more about the HIPAA de-identification standard here.

Do you ask before using someone’s information?

In general, yes. When it comes to information that identifies individuals, we ask for explicit permission before disclosing it (except for the narrow situations explained in the Privacy Policy, such as if a law or subpoena requires us to disclose something). If we want to share your story in a public blog post, for example, we must have your permission first.

On the other hand, we do share anonymous data with our partners without consent. That information does not identify individuals. For example, we may share a summary of the most important issues brought up by patients with a given cancer with a medical center that cares for patients with that type of cancer.

Please be aware that, even without your or our permission, it is possible that other members of the site may inappropriately disclose your information outside the site. You should thus be careful when deciding how much information to share in discussions on the site.

Is my information at Smart Patients safe and secure?

We use modern security measures to secure your information, including Secure Socket Layers (SSL) for encryption. For more information, please see our Privacy Policy.

How can I help protect my privacy?

The potential benefits of people sharing information with each other are tremendous. However, it is still important to take thoughtful steps to protect your own privacy and the privacy of other users. We encourage you to take these steps:

  • Choose your display name with care. Don’t use your name, email address, or anything linkable to your name unless you want everything you post, and others post about you, to be identified with you.
  • Protect your password.
  • Don’t upload your picture unless you are certain you want it to be shared.
  • Consider the possibility that specific information you share may make it possible for others to guess your identity.
  • If you post information about someone else, you must have that person’s prior permission, as explained in our Terms of Agreement.

How to use this site

Choose a Community, Join Conversations

  • When you first join Smart Patients we'll invite you to join a community where you will receive help and advice from other patients and caregivers who have experience with your condition.
  • We provide a list of our most active communities but if your condition is not listed, let us know and we'll help you find the community that is most appropriate for you.
  • After you join a community, you'll see conversations started by other members of your new community with the most recent conversations at the top.
  • If you see a conversation that interests you, click the title to read the rest of conversation. Reply if you have something to add.
  • Each time you visit Smart Patients, your home page will list all of the conversations that have new replies.
  • You'll also receive an activity summary every day that includes all of the conversations from your community.

Ask a Health Question

  • Click on “Start a conversation.”
  • Write your post: Give details. Share everything the doctor said. If you can, give the exact name, type, and stage of the disease if relevant (e.g., not just lung cancer, but non-small cell lung cancer Stage III); location of the tumors or metastases, size and extent; recommendations for surgery, specific drugs, or other treatment; age of the patient; tests and treatment already performed -- everything you can think of, as briefly and clearly as you can state it. Don’t worry about spelling; expert users will help with that. After providing information, ask your questions. This will help people jump right in with answers instead of having to ask you questions.

Follow Conversations to Receive Notifications

  • You can click the star next to the title of a conversation to "follow" it.
  • Whenever someone replies to a conversation that you are following, you will receive a notification email and the conversation will jump to the top of your home page.
  • Conversations are automatically starred when you reply to them. To stop following a conversation, unclick the star.
  • You can turn off email notifications from your user settings page.

How to Use Tags

  • Below the title of each conversation, you will see one or more tags that look like this:
  • Tags summarize the topic of a conversation and help you discover relevant conversations outside of your community. You can click on a tag to see all the conversations about that topic.
  • If you follow a tag, conversations with that tag will appear on your home page and your daily activity email will include all of the conversations for the tags that you follow.
  • Whenever you start a conversation, a tag representing your community will be added automatically. Experienced members can supplement the community tag with additional tags to summarize the topic more completely.

Deleting a conversation or post

If you post a reply to any conversation, you have a one hour window to edit any mistakes or to delete the post altogether.

The reason for these rules is to try to avoid the situation where parts of a conversation don’t make sense because a previous part was deleted or edited.

However, we realize there will need to be exceptions. If you really need to delete something but missed the edit window, just email us at info@smartpatients.com and we'll delete or edit it for you. Send us the title of the conversation and the body of your post so that we know we are looking at the correct post.

Clinical trial search

What is a clinical trial?

Clinical trials are a way for researchers to test promising new drugs and treatments and gather information about their safety, effectiveness, dosage, and side effects. Clinical trials are closely regulated by the federal Food and Drug Administration and are approved and monitored by Institutional Review Boards (IRBs).

Does Smart Patients promote specific clinical trials or drugs?

No. We do not recommend or endorse any specific studies, treatments, tests, procedures, or physicians.

How is clinical trial search at Smart Patients different from other tools for finding clinical trials?

We use data from ClinicalTrials.gov and provide what we hope is an intuitive and useful user interface. We also want to make it easier for patients to learn more about trials by having conversations about them. This is especially important in cancer and rare diseases, where so many of the treatment options are still in clinical trials.

Who are clinical trials for?

Patients for clinical trials are carefully selected by researchers according to various requirements related to the drug being tested. If patients do not meet the trial requirements, they will not get the drug or procedure being tested. However, patients who aren’t eligible for one trial may qualify for another. Clinical trials may be appropriate for you if:

  • Your disease is difficult to treat successfully.
  • You can’t get treatment for your condition because treatment doesn’t exist or isn’t available.
  • You want more options for treatment.
  • A delay of weeks or months before joining a trial isn’t problematic for you.
  • You want to help advance medical science.

Why you might want to participate in a clinical trial

  • Clinical trials broaden your options for treatment. If you are running out of treatment options, look into clinical trials.
  • Treatment and much of the necessary testing is provided free in a clinical trial.
  • It’s a good idea to look into clinical trials early in your treatment path because you are likely to be eligible for more trials at that point.
  • A clinical trial may provide you with treatment that will be standard in the future.
  • Your participation helps establish new and improved treatments.

Why you might not want to participate in a clinical trial

  • Any treatment has risks. Even though clinical trials are carefully controlled and highly regulated, some of the risks of the treatment being tested may be unknown.
  • If the trial is not nearby, it may not be as convenient as local treatment.
  • There often are delays in entering a clinical trial.
  • If you have other medical problems, these may block you from some clinical trials.
  • As with any treatment, your condition may not improve.

Miscellaneous

How to terminate your account

You can terminate your account at any time by visiting the Settings section of the site. Terminating your account will result in deletion of all information in your personal profile. Note that we do not generally remove content you have posted in community discussions. Please see “ Deleting a conversation or post ” for information about deleting your content in community conversations.

Can I download my data?

We don’t yet have a formal way of downloading your data, but we will.

Will you be adding more features soon?

Yes! And we’d like your feedback on what you would find most helpful. Please send suggestions to info@smartpatients.com. If you are already a member, you can participate in conversations about the design of the site by following the tag site feedback.