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June 30, 2011

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June 30, 2011

Over the course of my own personal healthcare advocacy I came across this organization and have found it a great source of solace and lighting rod of proactivity. As such I finally personally joined last year. Through that I have found that I participate more in the boarder goals of patient advocacy as opposed to personal advocacy. And, that I have found brings me out of my own medical quagmire. This organization helps bring together disparate patient voices to create a interwoven fabric of patient voices. And, that is the wonder of it all.

I find the society on the cusp of a new era. There are more engaged active participants and the society is entering a new phase of development from grassroots self-organizers to developing a broader voice (the adolescent phase). This phase needs to be managed well so that the organization's voice and mission are not compromised. (that is my one constructive feedback).

The Great!

I've personally experienced the results of this organization in...

SPM has helped me find a more active patient voice.

Ways to make it better...

If I had to make changes to this organization, I would...

There are no specific changes I would make except what i noted above. The new era of this organization needs to be managed well to ensure the mission statement is aligned with the activities.

June 28, 2011

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June 28, 2011

We founded the Society for Participatory Medicine to change the culture of healthcare from being a spectator sport, in which patients are passive spectators of their healthcare into one in which patients are active participants in their health and healthcare. This change requires engagement of patients, clinicians, health care provider institutions, and non-professional caregivers.

We effect this cultural change by:

* Hosting a channel for published research in the Journal of Participatory Medicine,
* Using social media outreach,
* Publishing a blog, e-Patients.net,
* Providing education,
* Being active in relevant public policy, and
* Nurturing a forum through which these ideas can be discussed by our members.

We have found there are no organizations that approach this topic with such focus and broad stakeholder engagement.

Now in our third year, we are growing our membership and recruiting more members to help the cause.

The Great!

I've personally experienced the results of this organization in...

I have been struck by the passion of our members, which is reflected in vibrant discussions on our Listserv, wonderful papers published in our journal, and fantastic and provocative viewpoints on our blog.

Ways to make it better...

If I had to make changes to this organization, I would...

Grow the membership, especially corporate membership through which we can more effectively fund operations and eventually hire an executive director.

June 25, 2011

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June 25, 2011

The Society for Participatory Medicine (SPM) has greatly contributed to my self-confidence as an e-patient. SPM helped me identify, articulate and overcome personal barriers that stood in the way of more meaningful and productive participatory experiences. Editor, Charlie Smith - reading my comments on the listserv - encouraged me to submit my stories to the Journal of Participatory Medicine. That process alone - with his editorial direction and encouragement - had me thinking through what I needed to do differently. I've found support and kudos from fellow SPM members - who've applauded my own blog. I'm so pleased for this opportunity to thank the Society for their help in my (continuing) journey. It's a safe place where patients and health care professionals can explore, debate, learn and celebrate the various meanings, nuances, dilemmas in the participatory medicine movement.

The Great!

I've personally experienced the results of this organization in...

creation of a glossary of medical abbreviations

Ways to make it better...

If I had to make changes to this organization, I would...

effort toward changing med school curriculum to include training for participatory meds

June 23, 2011

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June 23, 2011

As an e-Patient and advocate, SPM members provided me the information I needed to help with a serious medical condition for which I was not receiving adequate patient care from my surgeon. The advice I received was specific and some members even offered to help me find a new physician that was more "patient-care centric". With the help of SPM members, I was able to chart a course for remedying the situation and I got the medical care I needed.

The Great!

I've personally experienced the results of this organization in...

Participating as a member of a working committee.

Ways to make it better...

If I had to make changes to this organization, I would...

initiate their plans to grow the member base and training.

June 22, 2011

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June 22, 2011

I am a writer and thought leader in the area of patient engagement and empowerment and have written two books on this topic. What I like best about the Society of Participatory Medicine is that it is participatory and attracts individuals with diverse backgrounds and perspectives. From physicians to healthcare professionals to patients everyone is encouraged to share their ideas, contribute to the Society's blog, e-Patients.net, join the list serve and write commentaries and peer reviewed articles. In other words the Society is inclusive rather than exclusive.

In spite of the fact that discussions about patient-centered care and participatory medicine have been around for a while, this movement has just begun. The Society brings momentum and credibility to patient engagement.. It serves as a change agent to take us to the next level where patients become full participants with their care team.

To grow and continue to thrive, the Society needs broader support and commitment from a worldwide community so that it will be able to continue its important work. The future is promising and there is much untapped opportunity to be realized.

The Great!

I've personally experienced the results of this organization in...

conducting research for my most recent book, ePatients Live Longer. The excellent articles that appear in the Society's Journal and the ongoing ideas that come out of the list serve posts and the blog posts on e-patients.net have been invaluable in solidifying my ideas and communicating them to healthcare consumers everywhere.

Ways to make it better...

If I had to make changes to this organization, I would...

encourage the leaders of the Society to engage in a more comprehensive worldwide marketing campaign so that many more individuals and healthcare professionals would become aware of the important intellectual property that this organization embodies.

June 22, 2011

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June 22, 2011

I run a healthcare management consulting company in Denmark. Our mission is to help healthcare organiszations become patient centered. It is essential that all healthcare providers encourage patients and their families to get informed and involved in care. To learn how to do this well, our clients must understand both why this is important, and how it can be achieved.

Although I have only been an SPM member for less than two months, I have found a wealth of useful information and inspiring discussions through the Society for Participatory Medicine. The people who take their time to discuss their thoughts and share information in general are so insightful and intelligent, it's truly inspirational.

And despite the SPM being very North American in outlook and membership, it's not difficult to make the "translation" of relevant nuggets to the very different Danish health care system. For example, we have a current Danish debate about electronic health records. In the SPM forum, there was a discussion about what "ownership" to data means and implies. A thorough discussion of the term ownershiop from a philosophical, legal and practical perspective ensued. This has helped me clarify some confusion in the Danish debate, which was useful in a recent speech I gave to a Danish audience.

I hope that SPM will grow to encompass more active members from various countries, and thus become an invaluable resource for a broad base of international members.

The Great!

I've personally experienced the results of this organization in...

The impact of a speech one member gave at a conference in Denmark.

Ways to make it better...

If I had to make changes to this organization, I would...

encourage more participation from the non- US members.

More feedback...

How does this organization compare with others in the same sector?

Very Well

How much of an impact do you think this organization has?

Life-changing

Will you recommend this organization to others?

Definitely

What is unique about this organization?

It is the only organization I know that has such a lively and intelligent discourse on strengthening patient empowerment, using the web in many ways to reach a large audience both among patients and health professionals.

When was your last experience with this nonprofit?

2011

June 22, 2011

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June 22, 2011

I'm a scientific/medical editor who became a participatory patient a couple of years ago when I had a bout with breast cancer. I quickly learned to ask questions, get second opinions, and get copies of test results, and I joined a local patient support group. All of those things, as well as my communicative, collaborative clinician team, helped me to have a healthy outcome. Discovering SPM during my recovery was a wonderful revelation: By joining the Society, I broadened my support network and in turn I began supporting SPM's efforts to promote participatory medicine and the e-patient movement. There's something about a life-threatening illness that makes you want to share your experiences and "give back;" getting involved with SPM was an ideal way for me to do that.

The Great!

I've personally experienced the results of this organization in...

reading enlightening, informative journal articles and blog posts that underscore the importance and effectiveness of participatory medicine. SPM publishes a nice mix of personal anecdotes and evidence-based articles.

Ways to make it better...

If I had to make changes to this organization, I would...

love to see more members, both professionals and patients.

June 22, 2011

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June 22, 2011

I'm a professional with years of experience in the healthcare documentation industry. I learned about SPM almost a year ago and only recently joined the organization.

The resources provided for patients to understand participatory medicine are amazing. The organization works tirelessly
with help patients understand how to take control of their health care and become an active participant in the decisions that are being made about it.

With the constant changes in the healthcare industry, I believe it's even more critical that patients become involved and active. This organization is doing a lot to help make that happen. It is, in my opinion, an organization well worth checking out and becoming involved with.

The Great!

I've personally experienced the results of this organization in...

Helping patients to understand how to navigate the health care arena. I'm also quite impresseed at how quickly the volunteers in the organization step up to help with new projects.

Ways to make it better...

If I had to make changes to this organization, I would...

I would see more patients becoming involved!

More feedback...

How does this organization compare with others in the same sector?

Very Well

How much of an impact do you think this organization has?

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2011

June 22, 2011

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June 22, 2011

I recently left the practice of medicine, disenchanted with the fact that the focus of all my attention was towards satisfying regulatory requirements and spending less than 5% of my time discussing care with patients. It took me longer to do the paperwork for a procedure (implanting an implantable defibrillator) than the procedure itself. I am now looking forward to helping many more patients than I could in provate practice through initiatives like the SPM. I am invigorated and inspired by the people in this group who are striving to prevent the catastrophic high velocity disintegration of person to person caring and care in our healthcare system. I hope to lend my expertise to this organization which will empower patients and the public to gain greater interest and education about their own health.

The Great!

I've personally experienced the results of this organization in...

Inspiring me to get more involved in the organization. I've only been a member a short time.

Ways to make it better...

If I had to make changes to this organization, I would...

Enable it to receive more federal funding.

June 20, 2011

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June 20, 2011

As a new member of SPM I have already found tremendous value in this well-managed nonprofit organization and their free online journal, the Journal of Participatory Medicine (JoPM).

Since its inception, the synergistic effect of envisioning an ideal health care system evolving out of the
Participatory Medicine movement has contributed to this organization’s growth and sustainability.

If I had to define this stellar nonprofit my statement would be:

"SPM: Advancing best practices and consumer confidence in health care through Participatory Medicine."

Personally, I appreciate the SPM corporate philosophy that implements a “team” approach and decided SPM is an organization well worth volunteering my time to. The volunteer teams are comprised of providers, patients, medical support personnel and other professionals. These individuals have a passion and are making a strong commitment to SPM. They are taking a proactive approach to share their knowledge, experience, expertise and insights to collaborate and put in place mechanisms for organized action planning and development that will further enhance growth and sustainability of SPM.

SPM is not only an incubator for Participatory Medicine to cultivate ideas and accumulate evidence-based research; the organization itself is a model of the success that can be achieved by building provider-patient partnerships.

While SPM is providing a great service to those individuals suffering from many different medical conditions, my personal interest is advocacy for individuals suffering from symptoms of severe mental illness and psychosis.

Patients with severe mental illness experience a higher rate of chronic disease and have a shorter life expectancy than the general population. Many individuals with psychotic symptoms end up homeless, in jail or sentenced to prison. Some, like Jared Loughner, become a threat to society which leads to misconceptions, false beliefs and prejudice. Our prison systems have become human warehouses for those suffering from mental illness creating additional barriers for patients to become empowered.

Currently, the critical need to support mental health care advocacy does not have an effective agenda as organized advocacy groups have greatly divided opinions, send out mixed messages and maintain conflicting agendas.

The widely publicized argument between actor Tom Cruise and Today Show host Matt Lauer is an example of the impasse between advocates holding on to their opposing views without mediating their differences. The battle between advocates creates a lose-lose situation for an overall solution to mental health care.

Discussions and information distributed through the SPM community, along with articles in the JoPM continue to advance my knowledge of evidence-based participatory concepts evolving out of the critical need to improve mental health care. Articles published in the JoPM regarding Psychiatric Advance Directives, Peer Support Specialists and Shared/Collaborative Decision Making equate to concepts providing a win-win situation for mental health consumers to become e-patients and develop recovery strategies.

I feel the Participatory Medicine movement has the potential to contribute large scale, cost-effective improvement within both the mental health care system and the criminal justice system.

Participatory concepts applied to mental health care results in patient empowerment.

In my opinion, a Participatory Model of Mental Health Care gives a voice to the consumer and needs to be a universal platform for all advocates to agree upon and support through SPM membership.

I challenge all mental health advocates, consumers, providers, treatment facilities and educational institutes to learn more about SPM at: http://participatorymedicine.org/

If you can find a reason not to support the purpose and mission of this nonprofit as a individual member for only $30 or a through Corporate Sponsorship for as low as $250, please let me know your reason.

If you are someone who supports giving mental health consumers a voice, please consider the Society for Participatory Medicine a Great Nonprofit and support its overall mission to empower patients equally.


The Great!

I've personally experienced the results of this organization in...

I am a non-medical member of SPM. The editors of the JoPM worked with me to publish a narrative in their journal. I greatly appreciate being an e-patient with a voice.

Ways to make it better...

If I had to make changes to this organization, I would...

This is an organization that is evolving and all are welcome. The evolution process will produce the changes naturally.

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