Frequently Asked Questions
Who runs this website?
SpeakSooner.org was created by the Center for Communication in Medicine, a nonprofit organization dedicated to improving communication between patients, families and medical providers and educating the public about the importance of patients taking an active role in understanding treatment choices and sharing in decisions about care. You can read more here about CCM’s history and the work we do.
What’s the difference between SpeakSooner.org and CCM?
CCM’s work has primarily been focused on educating healthcare professionals to communicate more clearly and openly with their patients. But this work has shown us firsthand how important it is for patients to be empowered to facilitate communication themselves. One of our primary goals in launching SpeakSooner.org is to get our Difficult Conversations Workbook—which was written specifically for patients–into the hands of the people who most need it.
I noticed CCM is “A Division of the Institute of Medical Humanism.” What is that, exactly?
The Institute of Medical Humanism, a 501(c)3 nonprofit organization in accordance with the Internal Revenue Service code, was founded in 2001 to develop programs to bridge the communication gap between physicians and patients. The first project in this work took place at a cancer center in Vermont. A “medical humanist” is a role we created for a pilot program designed to document the patient’s perspective for the healthcare team. A writer, recognizing that the language of medicine and that of the patient are not the same, filled the position. In practice, the medical humanist’s job was to transcribe the patient’s concerns in his or her own words, so that information could be reviewed and misunderstandings addressed. The note was included in the medical record. The success of the pilot led the Institute to launch CCM, a division charged with developing new programs to improve doctor-patient communication. We invite you to read more here about our Medical Humanist Model.
Medical humanism as a field, then, focuses on helping healthcare professionals to better attend to patients’ individual needs and goals, instead of treating them through the lens of only clinical data. We believe this shift in focus benefits patients as well as healthcare providers by creating a sense of shared responsibility for decisions about care. Research studies suggest such a partnership results both in better outcomes for patients and in improved job satisfaction for the professionals caring for them.
Does CCM plan to make any materials for patients dealing with illnesses other than cancer?
Our Difficult Conversations Workbook was inspired by our work in a regional cancer center, but we believe the issues it addresses are universal to the experience of “being a patient.” What we have learned will be useful in creating new tools to help people facing other types of chronic or life-limiting diagnoses.
How does CCM support its work?
Our organization is sustained by tax-deductible contributions from individual donors, grants, foundations and the sale of our products. We rely on the generosity of others to support our mission. Learn more here about donating to support CCM’s ongoing work to improve communication in healthcare delivery.
Are you available for workshops or presentations?
CCM has made presentations and facilitated workshops at many conferences, medical institutions and community forums. If you are interested in inviting us to speak, consult or present an education or training program, you can learn more here about what we have done.
I think I already know how to have a conversation. Why do I need a workbook?
Writing down our thoughts not only helps clarify what we understand or expect -studies have shown it can also produce benefits for our physical and emotional well-being. Additionally, our years of fieldwork with patients and healthcare providers has taught us that during appointments when upsetting or confusing medical information is being conveyed, both patients and physicians sometimes miss critical details or are too overwhelmed to bring up important issues and questions. The Difficult Conversations Workbook can therefore be a helpful tool for reflecting upon and clarifying concerns in preparation for meaningful conversations during time sensitive office visits.
Will the workbook tell me what treatment options I should pursue?
The workbook does not provide direction on clinical issues. We hope that in using it, patients will be able to better understand and communicate their expectations, concerns and values. This clearer communication assists medical practitioners in planning care, and enables patients to make more informed decisions with the support and understanding of their loved ones.
If you care so much about patients, why aren’t you offering this content for free?
We do not make a profit off the sale of the Difficult Conversations Workbook. All proceeds from the workbook go to fund further development of products and educational programs supporting CCM’s core mission of improving communication and fostering healthcare partnerships.
I am a healthcare professional interested in making the Difficult Conversations Workbook available to all the patients served by my organization. Can I license it for this sort of use?
Absolutely! We’re delighted you are interested in partnering with and empowering your patients by offering them a tool to promote communication. We invite you to learn more here about licensing the Difficult Conversations Workbook.
I’m concerned about my privacy using this site. Will the information I enter in your interactive forms be shared?
I registered before but now I am having trouble logging in.
If you’ve forgotten your username or password, you can find username/password recovery help here.
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I would like to delete my account/be removed from your mailing list.
You can unsubscribe from SpeakSooner.org emails by clicking the “Unsubscribe” link at the bottom of any email.
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I submitted a story via your “Share Your Story” form, but it hasn’t been featured on the site. Why not?
We are grateful to you for taking the time to share your experience with us. We are a small organization and it takes a great deal of time to go through the numerous submissions we receive from site visitors. While we endeavor to regularly feature new content, at this time we are only able to select a small number of submissions. We hope that will change as CCM and SpeakSooner.org continues to evolve and grow.
Can I share the story of a friend, patient or family member?
All of our lives will eventually be touched by illness. We are therefore eager to hear from friends, family members and healthcare professionals as well as from patients themselves. All we ask is that if you are submitting someone’s story to be featured on our site, you check with them first to make sure that’s okay.
Will you be adding any more videos and workbooks soon?
Yes! We have already produced a video with prostate cancer patients that highlight their experiences facing the diagnosis and the challenges of understanding the risks and benefits of treatment choices. The video is entitled Men Do Talk. The accompanying workbook is in development and we plan to release the materials just as soon as they are ready. It is our hope that donor support will help us create additional communication tools for people living with other chronic and life-threatening illnesses.
Can the Difficult Conversations Workbook help me write my advance directives?
The workbook has been designed for those living with an incurable but treatable illness to help think about their own needs, goals and preferences for end of life care and to begin the process of talking with loved ones and the healthcare team. The exercises in the workbook were created to promote an evolving series of conversations that should begin sooner rather than later. This process can be an aid in completing advance directives.
Do you offer a certification program for medical humanists?
We are often asked this question. Our fieldwork has taught us that there’s a role in healthcare for a medical humanist, someone who could document the patient’s perspective and help facilitate communication. Yet, budgetary issues in today’s healthcare climate would likely limit employment opportunities. That is why we’ve created tools that serve to help patients be their own medical humanists.