Posts

Patient Empowerment Revisited: What Does It Truly Mean To Patients?

Language is constantly evolving in our everyday lives. This is also true of the language we use to describe patienthood. The words we use color how we view our world and how the world perceives us as patients. 

‘Empowerment’ is one of those words frequently attached to patients.  The term is most often used to emphasize the value of having patients assert greater control over their health care.

In a previous post, I set out to explore what it means to be an empowered patient from the perspective of patients themselves. I outlined seven essential facilitators of patient empowerment, from access to information, to health and digital literacy.  Now, two years later, I want to revisit the theme of patient empowerment to investigate what, if anything, has changed in the interim. 

Is patient empowerment still a concept that resonates with patients? 

Reaching out to my online network of patient advocates I received an overwhelming response to this question.  The following quotes, which I’ve synthesised around the most common themes, demonstrate a rich source of insight. Some of the responses you may find surprising as they offer a new perspective on the evolving nature of what it is to be a patient in today’s connected world. Others I feel sure will resonate. Take some time to reflect on what it means to you to be engaged, empowered and enabled in your own care and that of your loved ones. As always feel free to share your thoughts on this topic with the wider community via PEN’s social media channels. 

7 Themes Related To Patient Empowerment

  1. Agency, self advocacy and control
  2. Information, choices and shared decision making
  3. Partnership and a team based approach to patient care
  4. Respect, understanding and compassion
  5. Peer to peer empowerment
  6. Is ‘empowerment’ the right term to use?
  7. Empowerment requires a systemic approach

As there is so much to cover across this topic I’ve split the discussion into two parts. In this first part we will look at Themes 1 – 4. 

Theme 1. Agency, self advocacy and control

On your health journey, care is the vehicle – why not take the wheel?” – Darren Myles (@DRMJunior).

The first theme to emerge centers around a sense of self-advocacy and taking ownership of our own care. Certified Cancer Coach and Executive Director of Emerald Heart Cancer Foundation, Elyn Jacobs (@elynjacobs) considers empowerment as something that is “essential to successfully navigate the cancer journey. As an empowered individual, you can take the path of action and self-advocacy.”

Laurie Reed (@lreedsbooks) also believes being “empowered means recognizing that you have the ability and the right to act on your own behalf. Empowered means taking ownership of the power to effect change for your health and how healthcare is delivered.”

Brain Cancer Babe (@braincancerbabe) sees empowerment “ as taking control for yourself and of yourself.”

Liz Johnson (@wired4story) who calls herself “a career soldier of cancer”,  views the ability to “have some control in dealing with a disease that is completely beyond my control” as essential to her survival. “I’m the coach of my healthcare team (and policy makers and researchers) And all that goes into my survival,” she says. 

Lily Collison (@lilycollison), the mother of a son with Cerebral Palsy (CP), says that taking a more active role in the management of their condition, pushes patients beyond “being recipients of care.” 

Doing so is a proactive move, a term favoured by two-times breast cancer survivor, Georgina Tankard (@flowersorcakes) and Victoria (@terrortoria), founder of the Younger Breast Cancer Network (@YBCN_UK). 

“In the past, perhaps patients were expected to do as they were told. Nowadays with so many more options and so much information, patients can reasonably play a key role in decisions regarding their care,“ points out MS patient, Conor Kerley (@conorkerley). 

Theme 2. Information, choices and shared decision making

“Empowerment is having choices and being seen as the human at the centre of your care.” – Julia (@BCCWW).

Choice emerges as another central theme related to agency and control.  “Choice gives us that feeling of empowerment, “ says Elyn Jacobs, “it allows us to regain the much-needed control we somehow lost when we heard “You have cancer.” If you do not know your options, you do not have any. Empowerment comes from knowing your options, and obtaining the necessary information is critical to make the right choices for you, and for your cancer.”

As Elyn highlights, choice is informed by access to good, reliable information. In the words of cancer patient, Chris Lewis (@christheeagle1) “I need the information so that I can make informed judgments about my life.” 

How can patients be empowered if they don’t understand their condition?” asks Lily, who was amazed to read that a “2016 survey of 1,214 parents and caregivers of children with CP found that they judged available medical information to be inadequate to guide their decision-making. Another piece of research found that the greatest area of unmet need reported by young adults with CP was information.”

Having knowledge is one thing, but it’s the ability to act upon that information that is a key driver of empowerment. To quote Conor, “knowledge is power but only if that knowledge is acted upon.” 

For that to happen, the right environment needs to be facilitated around the patient. This leads us onto our next theme. 

Theme 3. Partnership and a team based approach to patient care

“Whether it’s called empowerment or involvement, the patient needs to feel they are part of the team”  – Noreen (@hiberniaroots).

Many spoke about the importance of a team-based, partnership approach to their care. As Stage IV TNBC patient advocate, Janice Cowden (@JaniceTNBCmets) explains, “I feel empowered through knowledge about my disease, as well as experiencing a team approach, or partnership, with my oncologist in planning my care.”

For caregiver, Wendy Morton (@wendyjanemorton) it’s important that “there is a partnership between ourselves and the care team. Also a genuine adherence to shared and thoughtful decision-making.”

In this team-based approach, patients still rely on their healthcare providers to actively engage with them.   “It’s still very much up to our doctors to let us know what types of options are out there and include us in decisions about how to get there,” emphasizes metastatic breast cancer patient, Meredith Kuiik  (@MeredithKulik).

For Susan Rudick (@susanruddick1), “the word isn’t as important as the patient being engaged and knowledgeable and most importantly being an integral member of the healthcare team when possible.”

Theme 4. Respect, understanding and compassion

“As a patient it’s a matter of LISTENING to us. Our voices are the power we have. What’s wrong doesn’t always show up in a diagnostic test or a scan. It’s our entire self – physical, emotional, psychological and the voice of the patient  is our empowerment” – Ilene Kaminsky (@ilenealizah).

Achieving this approach requires a willingness on the part of healthcare providers to create a space in which patients can ask questions and feel they are being heard on a human level.

In the words of breast cancer survivor Jen Douglas (@MMEJendouglas), it’s not just about understanding the diagnosis, but also having the opportunity “to ask questions and having providers who will take my concerns seriously.”

Metastatic breast cancer patient, Keillie (@LehrKellie) agrees. “Patient empowerment means I can ask questions to my oncologist and she will listen and discuss what I am asking. When I tell her of a side effect, she believes me even if it is not on the list of top side effects of that chemotherapy drug.”

Nancy Seibel (@nancylseibel) sums it up by saying, “I think it’s about respect, dignity and compassion on the part of healthcare professionals and patients. I can’t express in a single tweet how routine hospital and medical practices can humiliate and challenge one’s sense of self as a human worthy of respect.”  

As Elyn points out, “empowerment is hindered when a doctor does not respect the patient’s right to be part of the decision making or instills fear to obtain compliance. You are not just a patient, someone who is expected to passively accept the treatment plan being offered; you are a person, a person with choices.”

Being respected in this way has a circular effect, as Conor demonstrates by saying, “Personally, I believe that as I educated myself and became more empowered, that the attitude of my healthcare team towards me as a young adult changed and I was given more respect. This led to more shared decisions regarding my care and in turn led to me becoming more confident and feeling more empowered!”

It’s important to remember, in the words of Victoria, that “not every patient is the same and clinicians should adapt depending on an individual’s needs.” Patient advocate Barbara Jacoby (@letlifehappen) cautions that we mustn’t forget the cohort of patients who lack the knowledge and skills to become more informed in their care.  “I believe that it then becomes incumbent upon the medical team members to take the time to share with the patient and their caregiver, or other trusted person who can accompany them to their appointments, to explain proposed treatments and options and why such a course is considered to be the best for this individual person,” says Barbara. “Even if the person does not seem to want to be vested in their own decisions, the respect that the patient is given by the doctor builds a level of trust and confidence. This allows the patient to understand that they really matter and are seen as something more than another disease that needs to be treated. Knowing that you matter as a person will enhance the doctor/patient relationship and this automatically empowers the person to want to do their best.”

To conclude Part 1 of this discussion on patient empowerment I want to leave the final word to cancer patient advocate (@GraceCordovano).

Patient empowerment is often framed in the context of:

  1. Activating an individual patient, to essentially change their behavior to better themselves
  2. The doctor-patient relationship, with specific actions that could be done or incorporated to strengthen the interactions, trust, and clinical encounters.

A person’s health and pursuit of their best life with a diagnosis is so much bigger than these 2 traditionally referenced settings. Patients need to also be best supported to hack the health care ecosystem, to navigate its many silos and fragmented workflows, and to exceed the barriers that stand in the way of patients getting the care and resources they need to live their best life where they are.”

Join me for Part 2 of this discussion, where we will take a closer look at the role of peer-to-peer networks in building communities of information and support. I will also be asking if “empowerment” is an outdated concept.  Should we even be using the term in our discussions?   Join me for more answers to this question and further rich insights in Part 2. 

Asking the Right Questions at the Right Time #patientchat Highlights

Last week, we hosted an Empowered #patientchat titled “Asking the Right Questions at the Right Time: Navigating Your Path to Empowerment”. Below you will find the top tweets and the full transcript from the conversation on Twitter.

Top Tweets

Your Goals Matter


The Importance of Self-Advocacy and Support


Full Chat

Best Practices for Sharing Your Patient Story #patientchat Highlights

Last week, we hosted an Empowered #patientchat titled “Best Practices for Sharing Your Patient Story” with special guest The Patient Story (@Patient_Story). Below you will find the top tweets and the full transcript from the conversation on Twitter.

Top Tweets

Sharing Your Story Can Help Others


A Free Public Speaking Toolkit


Don’t Give Weight to Other People’s Thoughts


Full Chat

Building Resilience and Boosting Immunity #patientchat Highlights

Last week, we hosted our second Virtual Empowered #patientchat. The Virtual Empowered #patientchat was a moderated 45-minute conversation conducted online via Zoom and Facebook Live along with a lively discussion on Twitter. Below you will find the highlights from the online events and highlights from the conversation on Twitter.

Virtual #patientchat Highlights

Panel

“We can’t talk about frustrations without talking about resilience because that’s really how we manage these frustrations, how we bounce back, how we maintain our mental health and our physical health during these difficult times”

– Dr. Rochester

What is Resilience?

“Resilience really is about coming home to ourselves, to our center. We want to accept ourselves where we are, shine a light of awareness and sensitivity on ourselves with tenderness and with love. That’s what mindfulness can do for us.” – Broderick

“We all have things in life we have to deal with. What are the silver linings, what are the hidden blessings? Resilience really is how to jump back into your life” – Jill

How Do We Build Resilience?

“When i first was diagnosed, I did a lot of Bible journaling and some quiet inward time to think about it, and that really helped. Building community is a real big part. You need to connect with your family, your friends, and the people that are out there and let them help you. Focusing on personal health, things like yoga and meditation are huge, eating well.” – Jill

Boosting Immunity

Walking

  • Forest Bathing
  • Getting out into Nature
  • Dancing with “IV”
  • One step at a time

Eating Well

  • Dinner with family
  • Phase out added sugar
  • Smoothie game: Guess what’s in this one!

Stress Reduction

  • Breathing exercises
  • Mitigating suffering added by your own mind
  • Mindful acceptance and non-judgment

A Timeless Call to Action

It’s a matter of picking up the pieces, looking forward, and figuring out what you need to do next and what’s important to you. Be true to yourself… Cancer or any serious life-threatening thing really puts it in perspective. What you want to do with the rest of your life? – Gerri

Top Tweets

“Current me is where the fun is”

Alan's Top Tweet


Resilience Comes from Hope

Barby's Top Tweet


The Present is the Only Thing We Can Control


Full Chat

Ending Isolation: Tips for Connecting & Resources for Support Empowered #patientchat Highlights

Last week, we hosted an Empowered #patientchat on Twitter titled Ending Isolation: Tips for Connecting & Resources for Support Empowered alongside NORD. The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Increased Engagement Across Social Economic Boundaries


Ways to Improve Patient Access


Health Literacy Matters


Full Chat


For a list of all past #patientchat topics and transcripts, click here.

Steps to Improve Patient Access to Online Services

The telehealth market is expected to experience an 80% year on year growth in 2020 as a result of the pandemic, with telehealth services easing the burden on traditional healthcare systems by urging patients with mild or moderate ailments to use web-based applications for treatment or management. Telemedicine also takes the lead in the cancer care strategy during the coronavirus outbreak and will continue to play a role in the future to support symptom management, lifestyle changes, and medication protocols. Therefore, access to online services to support patients with cancer is crucial to coordinate care from availing of financial aid and medical services to legal and psychological support. Empowering the patient to take control of their overall care using internet-based technologies can improve care coordination with medical and legal professionals and may also reduce the burden on the health care system.

Learn to Navigate the Web

Of vital importance to accessing online services is knowing how to use the internet to search for resources that you may need. In addition to the basics of having an email that you use to communicate, you must familiarize yourself with the main features of browsers such as clearing cache, bookmarking, and viewing history as well as the practicality of tabbed browsing.

Another important aspect of being internet savvy is to learn to use search engines such as Google, Bing, or Duck Duck Go effectively that will enable you to find answers to queries on all types of subjects. Know that you can also filter and refine your search to yield results that are suitable to your queries. Hence, if you are looking for lawyers that can help you find financial assistance for your cancer treatment, it will save you time since most professional websites are optimized for search engines nowadays. Professional sites do this by providing relevant and authoritative content that are useful to website visitors ranking them high whenever a query is typed in the search engine and results are displayed. Keywords that are often used by surfers are also incorporated in the text and articles of sites, making these portals easy to find by search engines.

Retrieve Information and Benefit From Online Access

Now that you are confident about using internet technology, there are many things that you can do online to assist in your cancer care management. One of the constraints in cancer care is health insurance. Access to government portals and organization websites such as the Social Security Administration (SSA) for disability insurance benefits or the Cancer Financial Assistance Coalition (CFAC) which offers a data base of financial resources can already give you leads on where to get financial aid.

Although many people are benefiting from treatment outside of hospitals due to mounting medical costs, declining number of doctors, and an older cohort of patients who are living longer, outpatient care can lead to a decrease in support delivered by health care staff. The good news is internet-based tech including patient portals, websites, and apps can tip the scale to balance the perceived support deficiency.

The ability to access health records, choose health providers and place of treatment, book and cancel appointments online, find psychological support, and order prescription refills virtually are major steps in cancer care management. Telephony is also another feature of the internet offering free phone calls if a patient needs to talk to a healthcare provider or specialist urgently. Other forms of communication with doctors and hospitals include forums such as message boards and instant messaging. Mobile applications to track and fight cancer also make it easy for patients to sign up for trials and access research results and other information on the go.

Improved access to online services by learning to navigate the web efficiently and effectively can open up an entire virtual world to a person with cancer. It also empowers a patient by managing the coordination of their condition with different actors such as oncologists, lawyers, therapists, and psychologists.

Patient Access: Let’s Talk Health Care Technology #patientchat Highlights

Last week, we hosted an Empowered #patientchat on Twitter titled Patient Access: Let’s Talk Health Care Technology. The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Increased Engagement Across Social Economic Boundaries


Ways to Improve Patient Access


Health Literacy Matters


Full Chat


For complete list of #patientchat topics and transcripts, click here.

Virtual #patientchat Highlights

Community Matters: MD and Patient Authored Tips to Help You Stay Involved

Last week, we hosted our first ever Virtual Empowered #patientchat. The Virtual Empowered #patientchat was a moderated 45-minute conversation conducted online via Zoom and Facebook Live along with a lively discussion on Twitter. Below you will find the highlights from the online events and highlights from the conversation on Twitter.

Virtual #patientchat Highlights

Is Telemedicine a Useful Tool?

“I was experiencing some symptoms of COVID and I made an appointment with my PCP. We went over the symptoms and I tested negative for the antibodies, but I didn’t have to go in at the time when it was crowded.” – Mel

“I have always felt that we have under-utilized telemedicine. There is so much that can be done via a telemedicine visit.” – Dr. Rochester

“One of the best things I’ve seen from telemedicine is for a lot of people with physical ability issues or anything like that, or a really bad migraine or if you have a chronic illness that fluctuates every day. What if you make an appointment in December and it comes up a couple months later and you don’t feel good that day. You can still have the access to your provider and talk through any concerns or even potentially get help for a flare or things like that.” – Alexa

At Wits’ End?

“Be kind to yourself. Extend compassion to others. Find an emotional accountability partner. Write down a list of loved ones whenever you think of them so you remind yourself to check in later.” – Honora

Coping Tools

  • Don’t just zoom. Try online games with your loved ones!
  • Schedule virtual coffee or tea
  • Join a wellness challenge!
  • Take care of yourself

Community Empathy

It is normal to feel anxiety right now. Mel recommends finding the techniques that manage it best for you like doing some daily exercise to get your vitamin D. Stay focused: it’s a marathon not a sprint.

A Timeless Call to Action

“Reach out to others. You can physically distance without sociallydistancing. Pick up the phone, call someone, do a zoom call or facetime or skype, but don’t let these trying times prevent you from staying connected with your community and even from creating a brand new community.” – Dr. Rochester


Top Tweets

Sometimes You Need to Unplug


Enhancing Digital Health Literacy


Stories Are Still Important


Full Chat


For a full list of past #patientchat topics and transcripts, click here.

Community Check-In #patientchat Highlights

Last week, we hosted a “Community Check-In” #patientchat with Amanda Greene (@LALupusLady). The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Telehealth to save the day?


Online communities won’t be canceled


Use social media to find patients like you


Full Chat

For a full list of past #patientchat topics and transcripts, click here.

Best Practices for Participating in a Patient Community #patientchat Highlights

Last week, we hosted an #patientchat on “Best Practices for Participating in a Patient Community” with Carly Flumer (@carlyflumer). The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Dos and Don’ts


A Good Online Community


Always Somebody There


Full Chat

Cyber Hygiene: What Is It and Why Does It Matter? #patientchat Highlights

Last week, we hosted an Empowered #patientchat on “Cyber Hygiene: What Is It and Why Does It Matter?” with Casey Quinlan (@MightyCasey). The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Keep Your Online Info Safe


Physical Distancing 


Everything is Connected


Full Chat


For a full list of past #patientchat topics and transcripts, click here.

Removing Barriers to a Successful Patient-Provider Relationship #patientchat Highlights

Last week, we hosted an Empowered #patientchat on “Removing Barriers to a Successful Patient-Provider Relationship”. The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Holistic Medicine


“Equified Partnership”


Keys to a Good Patient-Provider Relationship


Full Chat


For a full list of past #patientchat topics and transcripts, click here.

Driving Change: How Rare Disease Patients Can Get Involved #patientchat Highlights

Last week, we hosted an Empowered #patientchat on “Driving Change: How Rare Disease Patients Can Get Involved” with RDMD (@rdmd). The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Equality vs. Equity


Continued Discussion


Culture Change


Full Chat


For a full list of past #patientchat topics and transcripts, click here.

Disparities in Care: Equality vs. Equity #patientchat Highlights

Last week, we hosted an Empowered #patientchat on “Disparities in Care: Equality vs. Equity” with Diverse Health Hub (@DHealthHub). The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Equality vs. Equity


Continued Discussion


Culture Change


Full Chat


For a full list of past #patientchat topics and transcripts, click here.

What Does Patient-Centric Care Look Like For You? #patientchat Highlights

Last week, we hosted an Empowered #patientchat on “What Does Patient-Centric Care Look Like For You?” and the #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Focus on Patient Activism


Patient-Centric = Viewing Patients as a Whole Person


All Patients Have Different Needs


Full Chat


For a list of all past #patientchat topics and transcripts, click here.

Events

Coming Soon

Please check back soon as we work to build more resources.