Tag Archive for: self advocate

MPN Patient and Care Partner Breakdown Terminology

MPN Patient and Care Partner Breakdown Terminology from Patient Empowerment Network on Vimeo.

MPN Empowerment Leads Jeff and Summer share how overwhelming medical terminology can be. Jeff encourages everyone to ask your healthcare team questions whenever you need to. He shares that asking the right questions is part of becoming an empowered patient.

Other Videos Featuring Jeff and Summer:

Roles Reversed: Taking Care of Your Care Partner

Patient and Care Partner Address the Mental Aspects of an MPN

How Can Care Partners Combat Burnout


Transcript:

Jeff:

Hi, I’m Jeff.

Summer:

I’m Summer and this little darlin’ is Zelda.

Jeff:

And we’re your MPN Network Managers (Editor’s Note: Network Managers are now referred to as Empowerment Leads) for the Patient Empowerment Network. Here to talk to you today about medical terminology, which often is very confusing. Isn’t it, Summer?

Summer:

Yes, I would say very confusing. And Dr. Tanaka told me oh, you need to take a bone marrow test to determine what kind of myelo, I’m writing this down, myeloproliferative neoplasm. Anyway, Jeff can explain all that to you. To determine all that and I thought, oh my god this is so confusing. She said – she kind of set me straight and made me realize that this is really important.

Jeff:

And, so, we didn’t know, neither of us, what these things meant originally. Dr. Tanaka explained some of it to us pretty well, but then I went home and I’m interested in this, so I became, I’m Summer’s caregiver. And I started doing research, and that’s what I’m going to give you some pointers that I found.

First of all, specific words you can probably Google and find on the web and they’ll tell you want it means. There are a number of organizations that specialize, in our case myeloproliferative neoplasms and blood diseases. The LLS, Leukemia and Lymphoma Society is one of them, and the MPN Research Foundation is another. And there is plenty of information here on Patient Empowerment Network about these diseases.

So, you need to find out the answers to the questions that you have. And you will probably do some of this on your own because you’ll have, when you have your appointments with your doctor you need to ask the questions. There’s no question that should not be asked, and your doctor will be able to tell you. If  you are blessed with a good care team, they’re going to have the ability to explain to you what’s going on with your disease in simple terms and terms that mean something to you. And we are truly blessed to have Dr. Tanaka who is able to do this wonderfully.

So, ask those questions, do your own research, you need to become an empowered patient. That’s what we had to be here at Patient Empowerment Network. So the more you know about this unusual disease, in our case – in Summer’s case, myelofibrosis, or other myeloproliferative neoplasms, which by the way that means cancers of the blood produced by the bone marrow, and we found that out. So, you need to become an expert on this kind of stuff yourself because you need to become an empowered patient. That’s our advice to you.

Until next time, I’m Jeff.

Summer:

Summer and I have another bit of advice. Being married or involved with someone who, like Jeff, had all this interest, if you’re not into medical things, helps a lot because I never really think about it very much. I depend on Jeff who does a great job.

Jeff:

Thank you very much, dear.

It’s part of our concept that we’ve told you about before. You’re really apart of a team. You have the caregiver, the patient, and your healthcare provider. So, become a strong team and you’ll be an empowered team.

Until next time, I’m Jeff.

Summer:

I’m Summer and this is Zelda.

What Healthcare Trends Are Observed in MPNs?

What Healthcare Trends Are Observed in MPNs? from Patient Empowerment Network on Vimeo.

MPN Empowerment Leads Jeff and Summer share trends they’ve observed since Summer’s initial diagnosis of myelofibrosis a few years ago. They share recent studies they’ve viewed and are following. Jeff gives a charge to viewers to be your own empowered patient and keep up with research when you can. “Be your own advocate.”

Videos Featuring Jeff and Summer:

Roles Reversed: Taking Care of Your Care Partner

Patient and Care Partner Address the Mental Aspects of an MPN

How Can Care Partners Combat Burnout


Transcript:

Jeff:

Hi, I’m Jeff.

Summer:

And I’m Summer.

Jeff:

And we’re your Network Managers (Editor’s Note: Now referred to as Empowerment Leads) for Myeloproliferative Neoplasms for the Patient Empowerment Network. And, we’re here today to talk to you about healthcare trends in MPN medicine, basically.

Summer:

I was diagnosed with myelofibrosis over three years ago. And at the time, they could only offer me one medication, Jakafi (ruxolitinib), which for me work but doesn’t work for everybody. So, I’ve had good luck with it and I haven’t really had any other symptoms.

Jeff:

But this is an exciting time in the MPN medicine because since that time, there have been two more medications released to control myelofibrosis. One called fedratinib. And just last month, pacritinib was released and approved by the FDA. So now there are three medications that can be used to treat the symptoms of myelofibrosis.

There are currently no medications that can cure a person of myelofibrosis. The only cure, currently, is a stem-cell transplant. But some exciting developments are happening that may even be able to cure it.

I just read an article that some scientists have found that the medication used in breast care – breast cancer treatment causes remission in bone marrow fibrosis in mice. So they’re working along the way to see if that will be effective in humans, eventually. And that might be, potentially, a cure for myelofibrosis. Those are exciting trends in the MPN research and medicine world.

Summer has other information that’s useful though.

Summer:

Yeah, that’s really exciting about the new medication. I was looking up what the Mayo Clinical has to say and being happy and having a good attitude really enhances the immune system. There is a chemical that you get that comes from being happy that really, really keeps the disease from being more serious.

So anyway, that’s what I believe in because I’m an actor and so I don’t get into the medical thing, but I know Jeff is brilliant for it. So, that’s exciting all along having a good attitude and the new developments in medication.

Jeff:

So, keep those in mind, consult with your healthcare provider, and you need to be your own empowered patient and keep up with the research by yourself. It’s all available online, no problems at all, just Google it and you’ll be able to keep up yourself. You have to be your own advocate.

Until next time, I’m Jeff.

Summer:

I’m Summer and, wait a minute, this is our little baby, Zelda.

Patient Empowerment Revisited: Part 2

Welcome back to the second part of this discussion on patient empowerment. In Part 1 we looked at self-advocacy and the importance of having access to information which allows us to take a more active role in our care. We also looked at how a team-based, partnership approach to care – one in which the patient is respected as a person – facilitates a more empowering environment. 

In Part 2, we’ll look at the role of peer to empowerment and explore whether the term “empowerment” is even the right term to use. Finally, we’ll conclude with some thoughts on the need for systemic change and a shared vision to embed new solutions into healthcare systems and pathways.

Theme 5. Peer to peer empowerment

“Engagement with your community, bolsters our confidence with good information.” – Britt (@mewhinney). 

Information, knowledge and the confidence to become a more active participant in our care also develops from engagement with other patients.  As Conor describes it, “I find being part of patient groups empowering for so many things, including where to find information, other peoples experiences and above all, chatting with others who just understand.” 

Piarella Peralta de Wesseling (@piarellaperalta), Patient Advocacy Lead at Diaceutics, is unequivocal in her belief in the collective wisdom and power of patient communities. “It is not clinicians nor industry nor government who have empowered me as greatly as the community of empowered individuals themselves,” she says. “No one has greater urgency to get it right, to evaluate and decide what best fits our lives than us facing the very challenges of the disease. People come to me and my fellow patient advocates to ask very simple questions that in the end just have two purposes, feeling heard, share in the knowledge of the devastating news that they have learned they have cancer, be in solidarity and then to know how they can make the best decisions relevant to them.”

Theme 6. Is ‘empowerment’ the right term to use?

When crowdsourcing these comments, I received some push-back on the use of the term ‘empowerment.’  To quote Piarella, the term itself “creates a sense of power differential and that is perhaps intuitively contradictory to the notion that each human has a right to be autonomous and self-determined.”

Kristie Konsoer (@kkbadger1) agrees. “For me, empowerment means taking action/speaking up so I feel like I’m participating in and influencing my health care,” she explains. “I empower myself. Empowerment comes from within. An authority can’t give it to me, but we can work together toward the same goals.”

Here are some more quotes expressing similar viewpoints. 

“For what it’s worth I think patient empowerment is lacking. It implies patients need authority given to them by another. Patient rights seem more fitting. Patients have rights, and doctors and healthcare providers must ensure those are not infringed but are guaranteed.” Mark Samber (@MarkMyWords67).

“I cringe at the term! Despite its well-meaning origins, it’s a conversation stopper within our hierarchy of medicine.” – Carolyn Thomas (@heartsisters).

“Empowerment is a convenient shorthand that smacks of condescension, as if someone is deigning to award me some of their power when I presumably have little or none. How about respecting patients and taking our input seriously. We can strengthen our own power by exercising it.” – Nancy Seibel (@nancylseibel).

“Like everything, thoughts on this evolve. #Patientsinvolved means patients can be as passive or pro-active as they like, but it also means they are heard and asked about their thoughts and needs. Empowerment perhaps is self-empowerment. Not that patients are ‘given power’?” Sharon Thompson (@sharontwriter).

“I think patients like to ‘feel’ empowered, because the word connotes being engaged, participatory and pro-active. At the same time it can be overused, although when people say they’re empowered by ‘xyz’, there’s ‘power’ in that.” – Cathy Leman (@dammadbrstcancr).

“Patient empowerment is a concept I believe in, but as a patient activist, I find the term somewhat passive. I’m also concerned that power is not something men diagnosed with breast cancer feel they have. Faced with a labyrinth of medical institutions and pink charities geared towards dealing with this predominantly female disease, those of us in the one percent cohort feel virtually powerless.” – Rod Ritchie (@malefitness).

“Not a big fan of the term because what exactly does it even mean? Empowered vs powerless, or what? Also, what empowers each of us varies so much as we are all unique. It’s another trendy buzz word. But if it works for some, that’s fine too.” – Nancy Stordahl (@nancyspoint).

“I use the word ‘empower’ in my mission statement but only believe it is worthy of a mission statement or used anytime when ACTION is taken. A word is empty without the tools/resources to use it.” – Terri Coutee (@6state).

Theme 7. Empowerment requires a systemic approach

The final theme centered around the need for a systemic shift in how patients are treated in the healthcare system.  As Julia (@bccww) put it, “empowerment would be health care services being appropriately funded and accessible to enable those with serious/long term chronic conditions to live well. It’s about being enabled (for me) to manage my long term health conditions, live well with them but with access to support and/or treatment (if I need it) to keep on course.”

Elizabeth Nade (@elizabethnade11), who prefers the term “patient activism”, points out, “I am already empowered. I am seeking change to the current healthcare model because it is insensitive and unresponsive to the needs of patients and their families. I want to challenge the relationship to affect change.”

Similarly, Patty Spears (@paspeers88), emphasises the need for systemic change. “I don’t like the term and how it’s usually used. Even unempowered patients need good quality care, not just empowered patients.  Rather let’s ensure equal and high quality care for ALL patients. Putting the burden on the patient (to be empowered) is a bad idea in my book.”

Cardiologist, David Lee Scher MD (@dlschermd), adds the physician voice to the discussion. “Education, awareness and tools are what is needed for patients to self-manage chronic diseases and navigate the healthcare system,” he says. “What you call it doesn’t matter. Labels and phrases (engagement, etc) in healthcare have yet to translate to better care.”

A Shared Vision

To conclude this discussion, I’m turning to Liz Ashall Payne (LizAshallPayne), CEO and Co-Founder @OrchaHealth, a passionate advocate for healthcare  transformation through digital and mhealth.  I  really like what she has to say about working together on a shared vision that puts the patient at the center of the entire healthcare ecosystem. 

“To truly support ‘patient empowerment’ we have to think far broader than the patient, we must also make sure we are empowering those that sit around the patient. 

We need to empower Health Care systems to be incentivised to support this vital work.

We must educate and empower our health care workforce to know how to empower patients 

We must support innovators to know what patients’ needs are, and how to embed new solutions into healthcare systems and pathways.

Above all we must COLLABORATE with a shared vision. 

The current COVID crisis has really brought the whole system together to drive digital uptake amongst our patients and populations, but we are not finished, we must do more, and there has never been a better time to do so.”