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Digital Advocacy and Health Equity for CLL Patients

Telemedicine or telehealth – remote access to healthcare – has become widely used after the arrival of the coronavirus pandemic, especially by cancer patients. But the rise in telemedicine has also brought challenges to the vulnerable populations of Americans over age 65 and to low-income Americans who have struggles getting online. Among patients who are over age 65, only 55 percent to 60 percent of them have broadband access from home or own a smartphone. These patients also have challenges with completing information online, with only 60 percent who have the ability to send an email, to complete a form, and to locate a website. Among low-income patients, only 53 percent are digitally literate, and they also have lower rates of Internet use, broadband access, and smartphone ownership compared to other patient groups.

As an avenue toward reducing inequities, the Patient Empowerment Network (PEN) and Diverse Health Hub (DHH) have partnered to help foster change toward achieving equitable healthcare for all. In order to provide practical usage of telemedicine tools, PEN created the TelemEDucation Empowerment Resource Center for chronic lymphocytic leukemia (CLL) patients and their loved ones. Another resource, the digital sherpa™ program, helps cancer patients and their families become more tech-savvy by learning to use technology to their advantage during their cancer journey and beyond.

Here’s a summary view of the knowledge gained about telemedicine to help provide optimal care to CLL patients: 

How to Optimize a Telemedicine Visit

Just like in-person care visits, telemedicine visits are scheduled with a time limit in mind. Some things to remember about telemedicine visits:

  • If a video conferencing tool is needed for your visit, install the tool on your laptop, tablet, or smartphone ahead of time so that you aren’t rushed when your appointment time arrives.
  • Just like in-person doctor visits, your doctor or care provider may run a few minutes late.
  • Try your best to remain flexible and to be patient.
  • Try to write down your questions before your appointment to keep on track about things you want to learn during your visit.
  • Remain focused on the main purpose of your visit as much as possible. Polite small talk is fine but keep it to a minimum so that you can get the most out of your visit. 

CLL Patients Who Benefit the Most From Telemedicine

Not every CLL patient will be a good fit for telemedicine visit. Things to keep as top of mind for telemedicine visits:

  • CLL patients who are on active surveillance from their care providers are a natural fit for telemedicine. They can get periodic blood tests from a local laboratory, and the results can be sent electronically for their CLL specialist to evaluate.
  • Patients with high-risk genetic features or rapidly progressing CLL are not the ideal patient for care via telemedicine.

In the time of the coronavirus pandemic, remote monitoring has become part of standard healthcare terms. Some things for CLL patients to know:

  • Though it may be a new healthcare method for many patients, monitoring has actually been used for decades in the care of CLL patients and others with suppressed immune systems.
  • Remote monitoring is used to reduce the risk of infection to those with reduced immune system function, such as those with cancer and CLL.
  • Remote monitoring is a completely safe medical practice for CLL care when a patient’s blood work is monitored on a regular basis. Always ask your doctor if you’re unsure if you’re a candidate for remote monitoring or if you have questions about the frequency of your blood tests.

How Telemedicine Can Improve CLL Care

Now that even more CLL patients have become accustomed to using telemedicine care tools, CLL experts are looking to the future. Looking ahead:

  • Telemedicine can help CLL patients who live in very remote areas to gain access to clinical trials that weren’t accessible to them in the past.
  • CLL therapies will continue to improve for patients as a higher percentage of CLL patients participate in clinical trials.
  • The improvements in remote monitoring will bring more tools for CLL patients to do routine things like sending their heart rate and other things to their care provider in real time. 

Telemedicine Glossary

Here are some helpful telemedicine terms to know:

  • HIPAA – HIPAA, or the Health Information Portability and Accountability Act, is a healthcare compliance law providing data security and privacy for the safeguarding of patient medical information. In telemedicine, provider-patient communication must take place through HIPAA-compliant secure platforms.
  • Patient portal – a secure Internet sign-on that allows patients to contact their provider, review medical tests and records, access health education materials, and seek appointments. Most provider networks develop a patient portal before they move to full video appointments.
  • Remote monitoring – type of ambulatory healthcare where patients use mobile medical devices to perform a routine test and send the test data to a healthcare professional in real-time.
  • VPN – a VPN, or virtual private network, is a secure and private way to connect to the Internet over public wireless connections. VPNs are particularly important for those living the digital nomad lifestyle and connecting in foreign countries where networks may be more vulnerable to communication transmission interference.

Now that telemedicine tools are gaining both in usage and numbers, CLL patients can feel hopeful about improved care and treatment toward the future. As a step in that direction, take advantage of the resources below and continue to visit the TelemEDucation Empowerment Resource Center for informative content about CLL and telemedicine.


Resources for Telemedicine and CLL

Dr. John Pagel’s Top Tips for Preparing for Your CLL Telemedicine Visit

Telemedicine Challenges and Opportunities for CLL Patients

Will Telemedicine Mitigate Financial Toxicity for CLL Patients?

What Subset of CLL Patients Should Utilize Telemedicine?

Will Telemedicine Be Part of Routine Management for CLL?

How Will Telemedicine Impact Time-Limited Therapy in CLL?

What CLL Population Will Benefit Most From Telemedicine?

Remote Monitoring

TelemEDicine ToolBox Visit Checklist

TelemEDicine ToolBox Glossary

 

Will Telemedicine Give More CLL Patients Access to Clinical Trials?

Will Telemedicine Activate More Remote Monitoring for CLL?

Will Telemedicine Improve My Quality of Life with CLL?

Will Telemedicine Be a Long-Term Survivorship Tool for CLL Patients?

What CLL Symptoms Can Be Monitored via Telemedicine?

Is Remote Monitoring for CLL Patients on CAR T Therapy the Future?

digital sherpa™ program

Health Equity: Is There a Paradigm Shift Underway?

Spurred by the most recent PEN #PatientChat on Twitter, on Nov. 13, 2020, it felt like a good time to explore what appears to be a paradigm shift in the American healthcare system toward health equity. The phrase paradigm shift was coined by philosopher Thomas Kuhn, forming the core of his magnum opus, “The Structure of Scientific Revolutions,” published in 1962 and still widely referenced in all kinds of places, including my good buddy e-Patient Dave deBronkart’s work.

2020 has been a year with many surprises – “surprises” in the sense of “oh good grief what now?” – with one of the most welcome being what looks like an actual shift in thinking within the healthcare system that health equity actually needs to be a thing, versus just “a thing we talk about at meetings.”

The CDC defines health equity as every person having the opportunity to live at their full health potential, with no one disadvantaged from achieving that potential because of social position or other socially determined circumstances. In other words, your social determinants of health should be the same as everyone else’s, no one should be left behind in that “life, liberty, and the pursuit of happiness” deal due to economic or cultural differences. That’s health equity.

The signals I’m seeing in the health policy and health system design and delivery circles I hang out in on an average day are strongly indicating that the ivory towers of our healthcare system have started to wake up to how very inequitable our health system has been, historically. In my lifetime, I’ve seen countless groups earnestly discussing this issue, doing what I call “admiring the problem” without any clear framework for a system-wide fix. But the times, they are a’changing?

Some of the strongest signals I’ve seen:

  • Health Affairs, the peer reviewed journal that the Washington Post calls “the bible of health policy,” published a post by editor in chief Alan Weil, “The Social Determinants of Death,” where he said, “It is not enough for health care institutions to stand against racism or with those who protest it. The test of the day is whether those institutions will use their power to fight racism. Will they cede wealth and power accumulated over decades to those who have been excluded? Will they engage in meaningful dialogue designed to break down barriers to a well-functioning society—one in which people engage in authentic relationships and learn of their shared humanity? If no one else is leading that dialogue, will they initiate it and include others as equals? Will we?”
  • The American Heart Association put out a call to action on racism, noting that the COVID-19 pandemic had made health inequity all too visible in the impact of the pandemic on communities of color, and specifically mentioned the police killings of George Floyd, Breonna Taylor, and multiple others as reminders of systemic racism in America. “Several principles emerge from our review: racism persists; racism is experienced; and the task of dismantling racism must belong to all of society. It cannot be accomplished by affected individuals alone.”
  • The American Academy of Pediatrics published a guide on how to talk to children about racial bias, noting that “parents may better face today’s challenges with an understanding of how racial bias works in children, as well as strategies to help them deal with and react to racial differences.”
  • The American Medical Association announced a policy recognizing racism as a public health threat, including “the new policy requests AMA to identify a set of best practices for health care institutions, physician practices, and academic medical centers to address and mitigate the effects of racism on patients, providers, international medical graduates, and populations. It also guides the AMA’s position on developing and implementing medical education programs that generate a deeper understanding of the causes, influences and effects of all forms of racism—and how to prevent and improve the health effects of racism.”
  • AcademyHealth, a leading health services research organization, centered health equity and issues of systemic bias and racism in its 2020 Annual Research Meeting. They’ve announced a racial equity strategy for their work that builds on what the org has already started on diversity and inclusion, noting that the dual pandemics of COVID-19 and racism signal a clear opportunity to assess their own values and actions, and to spur values and actions in alignment with health equity across the health services research landscape. “The challenge for a field that sees itself as impartial and unbiased is how to act to confront the reality of systemic, embedded racism as well as other forms of discrimination and challenge our assumptions about exclusion and inclusion, and the very idea of ‘unbiased’ science.”

There’s an opportunity here for patient advocacy community leaders to take a look at who’s at our tables, and on our leadership teams. Commitment to diversity, inclusion, and ending systemic racism isn’t just something that the healthcare system needs to tackle – we all can do our part. I’ve committed to recommending BIPOC (Black, Indigenous, and People of Color) patient advocates for leadership opportunities, and to point out the lack of BIPOC people in any advocacy group I’m part of, if that’s the case.

Nothing about us without us” means ALL of us. Let’s work together to make this paradigm shift deploy fully.

Is It Possible to Achieve Health Equity in Multiple Myeloma?

Is It Possible to Achieve Health Equity in Multiple Myeloma? from Patient Empowerment Network on Vimeo.

How can health equity be achieved for underserved communities in multiple myeloma patient care? Watch as a panel of myeloma experts explains.

See More From the Diverse Partners in Your Myeloma Care Program


Transcript:

Rebecca Law:

I want to ask each of you to answer a question. So how can we achieve health equity in the care of multiple myeloma patients sooner rather than later?

Diahanna Vallentine:

I think we all appreciate the fact that the African American or underserved communities do not have enough people that are either willing or know that we need to go into those communities the way they are, meet the people the way they are, so that we can provide them with education, with resources, that are available. I think that is one of the first steps. And fortunately, or unfortunately, with the racial problems we’re having in our country right now, a lot of governors and mayors are opening up opportunities that we got to get into the communities. And I think this might be a great opportunity for the myeloma community to perhaps step up and say we would like to be presented or represented in the community when there are funds and when the interest is really high. I think that if we could establish a foothold that way, then we can just go on and work toward lessening that gap and disparities in the undeserved communities.

Dr. Sikander Ailawadhi:

Diahanna, that was really nicely put. I think what I can add to that is that we basically are already seeing a lot more discussion, a lot more focus coming up to this topic of racial disparity in multiple myeloma at different levels. So, what we need to do is continue to build upon that momentum, continue to build the relationships so that there is actually a combined force from various aspects. I would love to do telehealth going forward, but like Dr. Usmani brought up, if there is not enough reimbursement or leadership or legislation to support all of that, then our wants and needs may not be served fully. So I think developing those relationships, developing those partnerships and moving forward as we’re gaining momentum to address this particular question, this particular issue is extremely important. And I feel it is more hopeful and exciting in the future as compared to where we’ve come from.

Jenny Ahlstrom:

I would just reiterate what Diahanna said. I think it’s in building the programs that are simple enough for everybody to understand and utilize that makes just the usability of them as available as possible, and then building that relationship in those communities where the needs are. I totally agree with what Diahanna’s saying, you need to take the programs to the people where they are and not to expect them to come to your programs.

Dr. Saad Usmani:

I agree with everything that has been said on this topic. And I have to say that this is going to be a two-way dialogue, a two-way partnership. That’s the only way that this can succeed moving forward. Racial disparities are an inherent part of our everyday life, whether it’s in healthcare, whether it’s in other interactions we have with each other, and there’s a lot of historic perspective and context to that. This is not going to be a quick fix, this is going to be a long-term process. But it will have to be a partnership. And I’m talking on a broader level with myeloma care and better survival outcomes for all myeloma patients as the goal. But then looking at the overall societal goals as well, and trying to see how we can remove the inherent biases that everyone has and develop more fruitful productive relationships going forward in our respective geographic regions, but overall in our country as well. I think that’s the overarching theme and tone of the conversations we’re having in the country right now, and it certainly makes sense to do that for myeloma care as well.

Rebecca Law:

I want to take the time to thank each and every one of you for joining me today. On behalf of the Patient Empowerment Network and Diverse Health Hub, I am Rebecca Law. Thank you.

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