Patient Voices Network – Volunteer and Make a Difference

Do you live in British Columbia? Do you want to make a positive difference to the province’s health care system? If so, you may wish to explore the Patient Voices Network. Ernie Hamm is an individual who chose to do just that and is very happy that he did.

Ernie Hamm loves to lend a helping hand and he’s been thoroughly enjoying donating his time with the Patient Voices Network (PVN). The Osoyoos senior, 77, has been volunteering with PVN for more than four years and has loved every minute of it. “I just volunteer in any area where they need help,” he said. … Click here to continue.

Clinical Trials – To Participate or Not

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Clinical trials are becoming more popular and as such, the demand for participants is increasing. Unfortunately, oft times patients who are being asked to participate or are considering joining are unclear about the nature of the study and what their involvement would entail. This, in turn, makes deciding whether or not to get involved in the study more difficult.

To address this issue, The Center for Information & Study on Clinical Reseach Participation has a number of questions on its website that may be of assistance to individuals contemplating clinical trial involvement. Here are five of the questions they list.
1. What is the main purpose of this study?
2. Does the study involve a placebo or a treatment that is already on the market?
3. How will the treatment be given to me?
4. How long is the study going to last and what will I be asked to do as a participant?
5. What has been learned about the study treatment and are any study results published?

To reading the list, click here. What, if any, questions would you add to this list?

Our Presentation

Jess and DebAs mentioned in the previous post, Pts4Chg was presenting today at the International Institute for Patient and Family Centred Care (IPFCC) conference in New York City. The presentation entitled, “Bridging the Disconnected: Empowering Advisors for Change Through Social Media,” was well attended and well received, both at the conference and in the Twittersphere. According to participants and presenters, the level of enthusiasm, energy and engagement was high.

Below are just a few of the tweets sent out during the session.

Thank you to everyone who attended the session in person or virtually. Special thanks go to Kirsten, Holly, Shannon and Jamie. Your efforts made live tweeting the event possible. Thanks so much.

You Are Invited…

Pts4Chg is presenting at the International Institute for Patient and Family Centred Care (IPFCC) conference that is occurring from July 25-27th. As part of the presentation, a Twitter exchange will be taking place. Please consider joining us in the Twittersphere to converse with conference delegates, share ideas and have fun. IPFCC2016

Date: Tuesday, July 26, 2016
Time: 11:15 a.m. EST
Location: In the Twittersphere at ‪#‎Pts4ChgNYC

Are patients the health care system’s free labor?

Have you ever felt overburdened by the amount of paperwork, phone calls, e-mails, appointments, etc., associated with navigating the health care system?  If so, you are not alone.

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In the article, “Unpaid, stressed, and confused: patients are the health care system’s free labor,” Sarah Kliff describes how the health care system can place considerable burden on the patient him/herself. This realization came about from her own experience managing a chronic foot injury. As Kliff explains:

What I didn’t understand was the burden patients face in managing the health care system: a massive web of doctors, insurers, pharmacies, and other siloed actors that seem intent on not talking with one another. That unenviable task gets left to the patient, the secret glue that holds the system together.

For me, this feels like a part-time job where the pay is lousy, the hours inconvenient, and the stakes incredibly high. It’s up to me to ferry medical records between different providers, to track down a pharmacy that can fill my prescription, and to talk to my insurance when a treatment gets denied to find out why.

Click here to read the full article.

Drug-free protocol for treating chronic pain?

painChronic pain is one of the most taxing health problems facing individuals. Although the pain can be problematic in and of itself, it can be accompanied by depression, loss of livelihood and independence and/or addiction to prescription pain killers.

Joan Broderick, senior behavioral scientist and associate director of the Center for Self-Report Science at USC Dornsife’s Center for Economic and Social Research (CESR), suggests an alternative to drug use. Click here to discover what it is.

Patient/Family Partners Wanted

Are you a Patient Family Partner in Canada? If so, you are invited to join a focus group or interview in person (Vancouver) or via telephone or webinar. To find out more about this exciting opportunity, click on the image below.

Call for Patient Family Partners

Please Note: The deadline to express your interest in participating in this project is May 31, 2016.

POR Training Program 4: Qualitative Methods & POR

If you are interested in Patient Oriented Research (POR), this might be something you want to attend.

The Patient-Oriented Research Training Program provides participants with a foundational understanding of Patient-Oriented Research (POR). It is intended to help equip research team members with the skills and knowledge necessary to engage meaningfully in projects that involve a POR approach.  The Training Program is open to anyone who is collaborating, or planning to collaborate, in POR. It is intended for graduate students, trainees, community and academic researchers, patients and family members, health care professionals, decision-makers, and industry and community stakeholders who are interested in learning about, or contributing to, POR in Alberta.  

Click here to continue reading.

Is Patient Engagement Tokenism?


Patient engagement is a term that is commonly used in the healthcare sector. However, what does patient engagement mean? Does patient engagement mean sitting on a committee and doing nothing more than rubber stamping decisions that were made elsewhere? Is patient engagement mere tokenism?  If not, what is patient engagement and how is it promoted, facilitated and supported?

In the article, “Beyond tokenism: How hospitals are getting more out of patient engagement,” Wendy Glauser, Michelle Satsiuk and Debra Bournes explore these and other ideas.