Tag Archive for: patient portal

Tools for Choosing Myeloma Therapy

Tools for Choosing Myeloma Therapy from Patient Empowerment Network on Vimeo.

When faced with choosing a myeloma treatment, what should be considered? This animated video reviews factors that impact treatment decisions, provides a list of questions to ask your healthcare team about therapy and advice for engaging in your myeloma care.

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Immunotherapy: Which Myeloma Patients Is It Right For? 


Whether a patient is newly diagnosed with myeloma or is facing a relapse, choosing a treatment approach can feel overwhelming.   

Shared decision-making is a process where patients and healthcare providers communicate and collaborate to make care decisions. This approach encourages patients to take a more active role in their care and treatment and can help them feel more confident when choosing a therapy. 

So, what can impact myeloma treatment decisions? 

  • There are patient-related factors, such as a patient’s age, fitness level, and pre-existing conditions. 
  • And, disease-related factors, including the aggressiveness of the patient’s disease and its location in the body. 
  • And, treatment-related factors, such as past treatments a patient has received or if they are refractory to medicines. 

How can you play a role in making treatment decisions?  

You can start by making a list of questions in advance of your appointment. This can help you to organize your thoughts before you meet with your healthcare team.  

And, when working with your doctor to choose a treatment, consider asking the following questions: 

  • What type of myeloma do I have?  
  • Are there test results that may impact my treatment choices? 
  • What are the risks and benefits of each treatment option? 
  • What approach do you recommend and why?  
  • How is the treatment administered, and what side effects might I expect? 
  • What are my options if this treatment stops working? 
  • Are there newer treatment options available to me, including immunotherapy?  
  • And, is there a clinical trial that might be right for me?  

It’s also a good idea to bring a friend or loved one to your appointment for support to take notes and help you recall information. Afterwards, discuss the appointment together – you can use this time to talk about your care plan and do your own research to learn more about your options.   

The patient portal is another useful tool in your care. You can use it to view lab and test results. And you can use the messaging feature to communicate with your healthcare team when you have more urgent questions to address before your next visit. 

Now that you know more about how to make myeloma treatment decisions, how can you take action? 

  • First, consider a second opinion or a consult with a specialist. 
  • Then, ensure you have had all relevant myeloma testing. 
  • Next, understand and participate in treatment decisions. This includes learning about your options, so you can weigh the pros and cons of each approach. And be sure to speak up and share your personal preferences and goals with your care team. 
  • Communicate regularly with your healthcare team – don’t wait to share information only when you have an appointment.  
  • And finally, bring a friend or loved one to appointments and always write down any questions or concerns in advance. 

Visit powerfulpatients.org/myeloma to learn more about myeloma and access tools for self-advocacy. 

Will Telemedicine Improve My Quality of Life with CLL?

Will Telemedicine Improve My Quality of Life with CLL? from Patient Empowerment Network on Vimeo.

How do chronic lymphocytic leukemia (CLL) patients and care partners feel about the impact of telemedicine on quality of life? Watch as a CLL patient and care partner, Bob and Susan, discuss how easier access to blood test results affects patient emotions before and during remote office visits.

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Susan Bottega: 

The role of telemed in terms of survivorship I think is a very, very interesting subject. CLL patients are living a very long life these days with the onset of the novel agents that are coming out. Quality of life becomes a very, very important subject for CLL patients. So much of their quality of life is diminished by the visits that they have to make into doctors’ offices.

The anguish that they spend the day before, the sleepless night that accompanies the doctor’s visit. I think that this is extremely important. You’re looking very possibly of at least two days taken out of your life, and if you’re making these visits on a monthly basis or bi-monthly basis or even tri-monthly basis, that’s a long period of time to take out of the span of your lifetime. And as we’re living longer, this becomes more and more important.

You want to have that quality of life, you want to be able to go on vacations. Your vacations can’t be postponed because you have a doctor’s appointment looming in the future. You can take your computer right along on vacation with you and share your vacation with your doctor.

Bob Bottega:

I like that.

Susan Bottega:

I think the anguish that you feel about blood tests is diminished by it. You don’t have to wait to get the results of your blood tests, your blood tests pop right up on your patient portal. You don’t have to sit there and wait in a doctor’s office until you see those results.

Once you see your doctor, you’ve already got your results and you’re calm about it, you’re relaxed because you know what the results are and you can discuss them without having to deal with the anxiety that comes with hearing, “Okay, my white blood cell count has gone up considerably, so how do I calm myself down to discuss this intelligently at this point in time when I’m emotionally so upset over it?” I think these are very, very important things about the quality of your life. How about you, Bob?

Bob Bottega:

I think you said it all.

Susan Bottega:

Don’t I always? (laughter)

5 Ways a Patient Portal Can Improve Your Health Care Experience

A patient portal is an online application which gives patients access to personal health information stored in a health care organization’s electronic health records (EHR). If your doctor’s office offers a patient portal, consider these reasons why you should take advantage of the service.

Schedule Appointments

Use the portal to request or schedule appointments with your health care providers.

Request Refills

Giving you a convenient way to request refills should make it easier for you to keep up with refills and avoid lapses in the medication regimen. One study found that patients who use the portal to request refills of cholesterol medications took the medications more consistently and had better cholesterol levels (compared to patients who didn’t request the refills online).

View your Records

With a patient portal, you gain access to critical health information that was previously locked up in the EHR. A typical portal allows you to view your test results, medications, immunizations, and allergies. A summary of your doctor visits and educational materials may also be available. You have the right to view this information and use it to participate more fully in your health care.

Improve the Accuracy of Your Records

Keeping a list of your medications may seem like a straightforward task for a health care provider using an EHR. However, there are several reasons why your medication list may not be current and accurate, reflecting the name and dose of all the medications you are taking:

  • Human error in entering the medications into the EHR
  • Incomplete information at time of medication entry. For example, in your first visit to a doctor, maybe you remembered the names but not the doses of your medications.
  • Over-the-counter medications are frequently overlooked
  • Providers from multiple health organizations are prescribing medications for you
  • You stopped taking a medication

Fortunately, some portals give you the opportunity to submit corrections to your medication list and other parts of your record. This type of feedback loop is designed to improve the quality and safety of your care. In small pilot study in the Geisinger Health System in Pennsylvania, patients used the portal to submit corrections such as:

  • Add over-the-counter medications, vitamins, and supplements
  • Add medications prescribed by providers outside the Geisinger system
  • Remove medications they had stopped taking
  • Make corrections in the frequency and doses of medications

Communicate with Healthcare Team

A patient portal allows you to exchange secure messages with your healthcare provider. Rather than wait on hold or play phone tag, you can submit a question at your convenience. The response time may depend on the triage system used by the medical office for electronic messages, the content of your message, and the frequency with which your provider checks messages. A systematic review showed that patients who communicate electronically with their health care team can enjoy improvements in the following health dimensions:

  • Knowledge about their health condition
  • Ability to cope with and manage chronic health issues
  • Blood sugar, blood pressure, cholesterol, and weight (for patients with diabetes)
  • Control of asthma and quality of life (for patients with asthma)
  • Chronic back pain
  • Self-esteem and empowerment
  • Stress, depression, and loneliness

Note that electronic messaging isn’t appropriate in all medical situations.

When You Should (and Shouldn’t) Email Your Doctor

If you don’t already do so, you probably wish you could communicate with your doctor by email. It would align your health care experience with the rest of your increasingly digital life. Who wants to play phone tag or be put on hold when dealing with health issues?

Emailing your doctor is best done through a patient portal linked to your electronic health record (EHR). This allows your doctor to view your medical history, medications, and test results when responding to your email.

Patient-doctor email will likely increase as patient portals become more widespread and federal incentives for email are rolled out. Someday, emailing your doctor may become part of standard medical care.

However, email is not suitable for all health-related situations. Just as there are rules of etiquette for work-related emails, there are a few guidelines for emailing with your doctor. This article will outline a few scenarios where it is appropriate and not appropriate to email your doctor.

Email your Doctor if . . .

You have a straightforward question which can be answered in one or two exchanges.

You can save yourself an office visit by taking care of the issue by email. For example, if you just need a refill of a medication you have been taking for a long time, and you’re otherwise doing well, then an email may save you and the doctor some time. Depending on the nature of the request, the doctor may forward the message to another member of the medical team or office staff. Some offices designate a nurse or assistant to screen all the messages and assign them to the appropriate recipient.

Note that the email exchange may not be free, because doctors can bill for the time they spend responding to your email.

You have been waiting longer than expected to hear about test results or other pending issues. Doctors can easily get bogged down with their responsibilities. A timely reminder from you is helpful.

You forgot or needed some clarification of what your doctor said during a recent visit. It can be tough to remember or process everything that you and your doctor discussed. Sometimes it’s best to tie up the loose ends by email.

You can supply information that your doctor requested, such as home blood pressure readings, or results of a test you had at another health care facility.

Don’t Email Your Doctor if . . .

You are reporting sudden or severe symptoms which could indicate a medical emergency. You may not get an immediate response, and your condition could deteriorate as you wait for a reply. Email in a medical setting is only appropriate for non-emergencies.

You want to discuss a complex issue that would require a lengthy back-and-forth discussion. These issues are best discussed on the phone or in person.

You want to discuss an emotionally-sensitive topic which can’t fully be addressed by email. Facial expressions and body language are important in communication. Sometimes an old-fashioned office visit is best.

You are unsure of the security of the email transmission. Patient portals are designed to be secure. But if you’re emailing your doctor at “Doctor@mail.com”, the message could be intercepted.

Once your email becomes a part of your medical record, other people who have legitimate access to your record may see it.