Rise Of The Patient Talk Show was Launched October 2012

21,000+ Downloads To-date!

This Year, 2013, The Series Continues

 

(#ROTPT)

2013 Brochure

 

Rise of The Patient? There is a movement happening. It is a quiet one however a critical one. Patients are finding their voice and are driving conversations in various arenas that are not necessarily in your traditional healthcare space. The movement has grown significantly since the advent of the social web. The technology has enabled patients to have conversations and connect with others with exceptional reach and amplification. They are driving change.

Guest Bios on the Rise Of  The Patient Show

Click here to review my guests bios.

Here is the show that started it all: Healthcare and Social Media

The Rise Of The Patient Program Outline

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The One Voice 

This segment  of The Rise Of The Patient describes the Environment from the individual perspective. This program segment will feature the stories of Patients, Care-givers, Nurses and Patient Advocates.

 

 A Nurse’s View Point  with  Jackie Hickey

[Nurse]

 

 

Jackie has over 25 years in nursing. In this episode Jackie shares the changing role of health care practitioners, patients, caregivers and community. There is an emphasis of the current patient movement with the growing need for a team approach to health care management. The transformation is moving us from a directive to collaborative approach; from less telling to more listening.

Jackie’s Social Pearl: “Invest in your health, just like you would invest in your children’s future and your financial future. You got to invest in your health. Take ownership of your health.”

Visit Jackie at Caring@home

 

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On The Road to Patient Advocacy with Regina Holliday

[e-Caregiver and Advocate]

 

 

Regina shares her journey on how she became a medical advocate. She paints a picture verbally of her husband’s fight with cancer; her challenge of breaking down the walls of the health care information system. She shares how she used those “walls’ as a canvas to paint her story and social media as a channel for her voice. The Walking Gallery and the Patient Summit are key milestones of her journey and for many who have crossed the path in search of patient engagement and collaboration.

Regina’s Social Pearl: “You don’t have to wait to change the world. There are many reasons to not to do something. Don’t give into that. You can make a difference today. Don’t delay.”

Visit Regina on her Medical Advocacy Blog

 

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When Health Care Works with Jennifer Kraemer

[e-Caregiver]

 

Jennifer is an advocate for preventative health care.

Jennifer shares the importance of getting the basics right: eat well, exercise and sleep. As a daughter of a nurse, she shares how the attitude of health care consumers have changed towards health care management. Jennifer also shares the importance of research, attaining objective information and staying informed. Jennifer is an advocate of partnering with their health care practitioner not only in treatment but also staying informed. Jennifer and her family are indeed, assertive partners in their health management.

Jennifer’s Social Pearl: “You as an individual are accountable for your health; the lifestyle you chose; what you eat; and how much you sleep. What you do to prevent a disease will dictate the outcome of your health.”

Visit Jennifers Linkedin Profile 

 

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A Caregiver’s Story Of Her Special Needs Son with Jennifer Sprung

[e-Caregiver]

 

 

Jennifer Sprung is the Mother of three. Jennifer shares her journey of driving for  the correct diagnosis of her special needs child. When she first noticed something was wrong with her child, she shares she had difficulty in getting any health care practitioner to listen. Her child was losing weight and very little direction or health care advice was given. Jennifer shares her need for straight talk from her health practitioners. With a history of health care providers assessing her own education, Jennifer shares her quest to find help and a doctor that listens. Jennifer shares her outreach to find answers and support in the international research community.

Jennifer describes herself today as a fully engaged care-giver seeking the best she can do to provide a state of well being for her special needs child. A truly inspiring story.

Jennifer’s Social Pearl: “Engagment is key. Engage in your children’s healthcare. Engage in your health care and that of your love ones because the pay off for it, is enormous.”

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Shining A Light On Disability With Lacey Frazier

[e-Patient]

 

 

Lacey Frazier’s profile reads “My disability does not define me, it gives me character.”

Lacey was born with Spina Bifida; the doctors did not expect her to live as it was the worse case they had seen. At the time of her birth, Lacy had 18 surgeries, one to close her back. Lacey has had to managed many health complications as a result of her disability. Despite her health challenges, Lacey has beat the odds of all the health care advice and predictions. Her mother was told that Lacey would not live past 4 days. Then they were told that Lacey would not live to see her 18th birthday. At the time of this interview, Lacy is 29 years old. Lacy is a sister, a pet owner, an aunt and has gone to college. Lacey shares that she knows her body and that no one knows it better than herself. She approaches her condition with knowledge. She shares  that she researches everything. She shares that she is not just treated,  but that she comes to the table with questions and options. Lacey is an assertive, young lady that expects to be treated with respect and that her practitioners are well versed in her medical history.She shares that there needs to be an open dialogue, that she is part of the team working together for the best health solution. Lacey shares that you have to be your own advocate

Lacey’s Social Pearl: “Ask Why. Always ask why. Don’t be afraid to ask why. Just like her nephew, approach things like you are a child.”

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Navigating Through The System with Deborah Lockhart

[e-Caregiver]

 

 

Deborah Lockhart is a caregiver for her aging mother. Deborah shares that it was a gradual process and given that her mother was a very independent peson, handing over the reigns was very challenging. Deborah shares the importance of doing one’s homework and evaluations when it comes to selecting your doctor, home care and health care case management provider. My favorite  quote from Deborah is: “If you have a health care provide who does not welcome your myriad of questions, you are with the wrong health care provider. A good health care provider will encourage you with your list of questions. You are not an interruption to their work. You are their work.

Deborah’s Social Pearls: “Small steps accomplish big things. Be aware that there is a whole world of caregivers out there. You don’t have to feel isolated. Being a caregiver is a noble thing. Reach out and ask; share your experience; get advice through social media or other means.”

Visit Deborah on her site

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The Organized Voice 

This segment  of The Rise Of The Patient shines a light on  Patient Groups,Therapeutic Associations and Leaders. These organized voices share their triumphs and falls. An engaged discussion on how the environment has changed and predictions of what  is in store for the future.

 

Cause For Concern, Long Term Care with Catherine Richards.

[e-Caregiver and Advocate]

 

 

Catherine shares the need for accountability on the health care system. Catherine shares her experience as a caregiver advocating care for your late mother who died in a long term care home. Catherine advocates the need to protect those that are vulnerable. Catherine advocates the need to have the ability to ask questions  and challenge without fear of repercussion.

Catherine’s Social Pearl: “Accountability is needed in our healthcare system.”

Visit Catherines blog

 

 

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The Importance of Partnering As  A Caregiver with Vicki Whiting.[e-Caregiver]

 

 

 

Vicki Whiting shares her extraordinary journey of the mis-diagnosis of her son that continued for over 2 years. When her son was 13 he was a very active happy boy, then suddenly he found himself enveloped in significant pain and lost 25 pounds in 3 weeks! Vicki shares when they arrived in emergency his appearance looked “anorexic” and it became the basis of the diagnosis and treatment thereafter. After navigating through a system that prescribed many anti depressants to a child that was not anorexic, not depressed however became suicidal as a result of the drugs, Vicki and her son travelled to Australia to meet with specialists. They found a culture that embraced listening. Their story is captured in their awarding winning book “In Pain We Trust”. The synopsis is shared in this interview.

 

Vickie’s Social Pearl: “Listen. Listen to your  child. Doctors  listen to us. Listening is going to make a difference. Listen without bias.”

Visit Vicki’s site.

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The Organized Voice and Best Endings Kathy Kastner.

[e-Patient Advocate]

 

 

 

Kathy is a well known face in both patient communities and participatory health care management. Kathy loves learning about people. This passion led to her work on television namely, the Parent Channel and Health TV. Through her work with patients and care-givers it lead to her current initiative “Best Endings”. Her website and app enables people to think about life ending challenges and having the conversation on this somewhat difficult subject. Kathy shares the importance of planning end of life and the items one should consider.

Kathy’s Social Pearl: “ Sharing your thoughts and wishes for your end of life care is a pay it forward item. As much as it is important for you to think it through, it is a gift for those making decisions on your behalf.”

Visit Kathy on Best Endings

 

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Bayshore Home Health and Community Health with Jackie Hickey.

[Nurse & Community Health Advisor]

 

 

 

Jackie shares the importance of home and community in health care management. As we continue to manage and improve our health care system, Jackie reminds us that there is a great need to get patients back into the community, back to the workforce and back to their previous existing lives.

Jackie’s Social Pearl: ” When it comes to home care, do your homework. Ask for help. Don’t wait until it is too late.”

 

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Collaboration 

This segment of The Rise Of The Patient shines a light on the partnering of patients and healthcare providers to managed their healthcare and improve the system. Stories of partnered management, community and co-creation.

 

Community Facilitation and Collaboration in Health Care with Val Purser

[Community Health Leader]

 

 

Val says that it takes a community to make a difference.Val shares an inspiring journey on how a community connects people with health support. Health care providers in her community, connect with community based organizations to not only provide for those in the community but to also provide for the most vulnerable patients today. Val highlights that the face of the most vulnerable does not always fall into the stereotypes in the mainstream media, it also includes those that were once employed in very professional jobs but now have found themselves lost in today’s economy and do not know how to ask for help.

Val’s mission is to unite the community for access to health care. I love her quote: “There is no WRONG door when you need health care”. She shares that we need to provide resources to provide health care for the whole person and  not just components of health. This is where health care collaboration hits the pavement.

Val’s Social Pearl: “As you navigate through the rest of your life, be open to collaboration. Other people and other people ideas are often better than your own. Find a group of people and individuals who challenge and inspire you. Spend a lot of time with them and it will change your life. Amy Poller.”

Visit Val at  South Metro Health Alliance

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Collaboration in Healthcare with Kathy Kastner

[e-Patient Advocate]

 

Kathy’s approach to health has always been from the perspective of the everydayman’s point of view. Kathy shares that she loves the topic of ealth and people stories on how they cope with health. This has led to a number of successful ventures in Kathy’s journey, marrying broadcast with health stories. Her starting point is often language and terminology that she translates into layman’s terms. Kathy is an advocate of Patient Collaboration. More recently her article and definition of participatory medicine and health care has been translated in multiple languages around the globe. By leveraging social media, Kathy has built an extraordinary skill of bridging those who work in the practice of health care with those who live with health conditions. Kathy shares her insights in this interview.

Kathy’s Social Pearl: “The social world offers 4Cs. Connectivity; Courage; Content; and Confidence. If you go into it with that mindset, the world is your oyster.”

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Patients Like Me with Sally Okun

[Nurse and Patient Advocate]

 

 

Sally brings to light how PatientsLikeMe is indeed a hub for patient collaboration. Sally shares that there are over 160,000 registered users/patients on the site. Here, patients come together to share their stories and their experience. Sally also shares that approximately one third choose to make their profile public. For a number of patients, the site has meant they are able to talk to others, with the same disease, for the very first time. It is this first step that leads to a journey of peer-to-peer, patient collaboration. Sally goes on to describe the work that PatientsLikeMe is doing in Data Driven Patient Collaboration; Research Patient-Centered Collaboration; and Adverse Event Reporting.

Sally’s Social Pearl: ”Listen well to patients. They have so much to teach us.To begin to appreciate and understand that patients and those closes to them are the true experts in their conditions and in their care. How they have learned to manage their lives in the presence of illness is really often invisible to  providers. Clinicians and those in health care need  to stop and listen carefully to patients they have so much to teach us.

Patients first. To learn. Listen well. To impressons by patients first.“

Visit Sally on PatientsLikeMe

Also read the post I wrote on my interview with Sally

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Fighting The Disease and Driving For Humor with Zal Press

[e-Patient]

 

Zal shares his story of living for over 30 years with his chronic illness, Crohn’s disease. In the interview he reflects on responding to an ad that needed a speaker on Crohn’s disease. Little did he know at the time that this was the first step to developing his platform for storytelling. He realized that story telling not only empowered him but it also provided additional clarity on how his condition impacted all those around him. He shared the reason of giving his platform the name Patient Commando. It was to put patient collaboration in the centre of the a health care system. The reality is , health care for the most part draws from a military influence. Zal connects the dots of the attributes of a Commando, such as preparation, coordination and collaboration,  with that of today’s patients.

Zak’s mission with Patient Commando is to apply the power of story telling to improving and changing health out come; to improve patient safety and to provide a guide to practice change. Zak shares that every patient has a story and when told well can change lives.

Zal’sSocial Pearl: ” What this is all about , it is about suffering. But it is also about joy. When you are in contact with an ill person, people who are in sick, people in pain, who are in anguish or inr fear, you open yourself to suffering because you are allowing yourself to come close. And you will suffer more with more contact. You will grieve, you will mourn, you will cry ,you will worry and will be in pain just like the patient. As you make that contact you also open yourself to the joy and the reward,and the realization that your human equipment is being used to benefit another human being. You will also become a better person. As you go through this experience you will be eleveated by the process. It does hurt more, but it does give you great joy. If you want to do without the hurt, you have to do without the joy.

Visit Zal on his site Patient Commando

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The Patients Association with Sholom Glouberman

[Community Leader]

 

Sholom shares the mandate of his association [Patients Association] and his perspective on health care today. The mandate of Patients Association grew out of the experience of those who use it. Sholom shares that the patients that use the health care system the most today are those with chronic conditions. He further shares that the health care system was built to manage acute conditions and hence the disconnect and misalignment. With this recognition, Sholom and his association have focused on partnering and collaborating to help close the gap to improve health care management. Members of the association are part of a number initiatives including collaborating in re-designing patient centered, hospital services and more recently the implementation of the Patient Choice Awards.

Sholom’s Social Pearl: “Your experience in healthcare can make a difference to the system. You can make a difference. This is the time.”

Visit Sholom on his site Patients Association

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Participatory Health Care and Enablement with Colleen Young

[Community Leader]

 

 

 

Colleen is no stranger to my show. In this episode Colleen shares her insights on the people side of enablement using the Canadian Virtual Hospice as an example. People are taking more ownership to stay in a state of good health and/or managing their disease state. Colleen shares that socializing and enabling health care can take a number of forms that include both people and technology. In this episode Colleen provides insights to Enabling Health Care Management; Participatory and Peer-to-Peer Health Care; The E- Patient; Health Care Collaboration; and Healthcare Social Media Communities

Colleen’s Social Pearl: “A community is made up of people. Have an adoption plan is in place when the technology is nolonger supported.”

Visit Colleen on her site, Canadian Virtual Hospice

You can also read the post I wrote about this interview.

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Enablement 

This segment  of  Rise Of The Patient shines a light on how business leaders,  industry and technology have enabled positive healthcare management.

 

 Health Care Information Simplified  with Andrew Spong

[Industry Leader]

 

 

Andrew shares the story behind Stwem and his perspective on social technologies in medicine. He reminds us that the information that is most easily discovered via search is not often the most relevant or reliable health information. High quality content is not often search optimized. Andrew shares the importance of search optimization techniques.

Andrew shares that when seeking quality health content, one should consider sites that list its sources, high publication sources, provessional societies and evidence based resources. Health care professionals, Opinion leaders and Patient Communities are also excellent sources of high quality health information. Andrew also shares how Wikipedia should be used and populated when it comes to health information

Andrew’s Social Pearl: “We are still very much in the infancy of a communication revolution; a move from monologue to dialogue. So many will try and convince you that all we are doing now is tidying up the loose ends. We are still in a revolution period. So resist orthodoxy don’t let anyone tell you have to do it a certain way. You don’t. Find your own way as that will be right for you. Remain skeptical. Scepticism is a good thing in health; make sure. Ask questions. There has never been a better time to ask questions. There has never been a time to ask questions and get informed, crowdsourced ,reliable answers.

Visit Andrew on his site

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Health care Language and Interpretation with Deborah Lockhart [e-Caregiver and Industry Leader] 

 

 

Deborah and her network have at least 30 years in translations and interpretation. She shares that they provide these services in the health care sectors on a number fronts. Their clients include doctors, patients, insurance companies, and litigation. She shares that she has often found herself in between the doctor and patient relationship as an interpreter. It can be a very sensitive and delicate balance.

Deborah’s Social Pearl: Stay connected and communicate with key contacts on what kind of needs and what kind of services are out there. Always try to be aware of the ever-evolving and expertise to remain relevant in the health care system.

Visit Deborah at The Language Shop 

 

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Nursing and Health Care with Robert Fraser [Nurse]

 

Rob is  an innovative leader and a role model of how nurses should embrace new technologies. When asked about his background, Rob shares that “He is loved by many, paid by a few” . Rob is an award winning author for his book: Nurses Social Media Advantage. His book was listed as a must read for nurses in 2012.

Rob shares that Canada is one of the high spenders when it comes to health care however Canada performance is less than a number of countries. Rob talks about his role in the National Expert Commission panel; a panel deployed to assess the future horizon of health care in Canada. Rob shares that a key outcome of the report is the need to take more action towards patient centricity and the need to integrate technology to give patients what they need. Rob advises that as a nurse, he is very close to the patient experience and sees first hand the need to look at the patient view point. He shares “If you focus on the needs of the patient, you will see a more efficient system and better outcomes”.

Rob’s Social Pearl: “We live in an exciting time. I  highly encourage people  to reach out and get involved. Join in the conversation. There are a lot of opportunities out there and ways you can get involved.”

Visit Rob on his site

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Encore!  

This segment is as a result of the level of engagement in the health care space!

 

Looking at Managed Health Care with Skip Schwartz

[Industry Leader and Patient Advocate]

 

 

Skip shares insight on health care issues both in Canada and other places around the world. In this interview, Skip talks about managed health care and his launch in Canada. Skip reminds us that most people’s experience with the health care system is episodic or incident based. What he has seen is that the most productive and efficient way to managing health care  is not in an episodic approach to one’s health care but on a continuous way to managing care. Skip shares that managed care is on ongoing relationship and coordination of an individual’s health. The managed care provided by his organization is open 24hrs and adds a personal touch care to ongoing care.

Skip’s Social Pearl: “Health care is one of the most important issues in all of our lives. All of our family lives. We got to make sure that health care is provided to people in a way they want; in a way they can be engaged. In a way that creates relationships that are trusting and knowledgeable. I think the basis of a good health care system is primary care. It is the foundation level of the health care system. This level has got to be based on solid relations and engagement of patients to really think about what they want and tell their caregivers who should respond in a productive way.” 

Also visit Skip on his site, Health365

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Mobile innovation in Health: Scheduling with Zakir Hussain

[Industry Leader]

 

 

 

Zak is an telecommunication expert and leader. Zak shares his opinions on mobile health and his solution of Velo Mobile Heatlh.

Zak’s Social Pearl. ”The health care system needs to change, to cut cost and to improve efficiencies. Companies such as ours which has innovative solutions using mobile phones and internet technologies can have a major impact in driving this change. We are facing resistance from entrench stakeholders in the industry. This is an industry which has not seen change in 100 years of practice. It is not easy to be in there. I think consumers or patients need to demand more, demand better service and demand that they adapt and include new technologies in the practice of their profession. We can make a better health care system in Canada and care around the world as well.

 

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 e-Patient Dave shares his story and the need for Collaboration in Health care

[e-Patient and Advocate]

 

 

 

Dave shares his journey of surviving stage IV kidney cancer. He shares how the online community, ACOR, was instrumental in pursing his treatment. A treatment that sometimes work but sometimes does not. Remarkably Dave shares that this information does not exist in the  “traditional reliable estabhished health sources” but only resides in the patient community.

Dave shares that even today, 3 out of 4 patients that have his cancer are not told about this option. Why? The information in databases where oncologists are taught to reference are severely out of date. Secondly, the reality is the world is moving at such a pace, it is hard to keep up. Doctors need help. Dave’s key messages are around 1) access to patient information; 2)let patients help and 3)patients are not a third person word.

Dave’s Social Pearl: “Form a partnership between patient and provider. It is the best way to make health care work better for everyone.”

Visit Dave on his site.

 

 

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The Need for Patient Access to Medical Information with Kevin Leonard

[e-Patient and Advocate]

 

 

 

 

 

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 Socializing Health Care with Dr. Kevin Pho

[Health Care Practitioner, Keynote Speaker and Author]

 

 

 

 

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Managing Care as a Trilogy with Dr. David Lewis

[Health Care Practitioner, Patient and Caregiver]

 

 

 

 

 

 

 

 

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Cheers¡

Shirley

 

 

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