Two Great Links

I have added two new links that I highly recommend:

• Shared Health Data - a blog and more, written by my friend and colleague, Susan Woods, MD, MPH,  a primary care clinician, researcher and e-health advocate at the Portland, Oregon Veterans Adminstration Medical Center and Oregon Health Sciences University. I referred to Shared Health Data in my previous post about Personal Health Records. Sue describes her blog as follows, "This is a blog about better health and healthcare through exchange of health information, greater transparency and proactive engagement of consumers." It is all that and more. Check out her most recent column which celebrates Steve Jobs's contributions to the transformation of computing into consumer-friendly and empowering applications. She also imagines what Steve Jobs might have created if he worked in healthcare. Click on the link in my favorite sites list or go to http://www.sharedhealthdata.com/
• Mind the Gap - written by Stephen Wilkins, MPH, a former hospital executive and consumer health behavior researcher who became inspired to focus on patient empowerment as a caregiver for his wife during her successful, and traumatic, experience with cancer.  Mind the Gap offers, "evidence-based insights and best practices for improving patient engagement and the quality of communications between patients and their doctors". Stephen's latest post is entitled, "3 Reasons for Becoming More Patient-Centered". Check out the blog at: http://healthecommunications.wordpress.com/ . It is also on my favorites list.

Personal Health Records: Another Path to Empowerment

In my latest column in the October issue of MPN (Myeloproliferative Neoplasms) Forum, I share ways in which I have used a Personal Health Record (PHR) to track information about my condition. Using the tools available in PHRs, I can create graphs that show the relationship between treatments and key lab values. Sharing these graphs with my physicians not only helps us to make better decisions about my treatment, it also saves time and allows us to focus on what's important to me, including my feelings and concerns about my condition. My doctors have been very receptive to my use of these tools, and I have benefitted from the increased time they havefor empathy!

See link to the column in MPN Forum below:

http://mpnforum.com/a-oct-michael/

Note: the link is no longer working, so here is a version of the article:

The Empowered Patient – MPN Forum

October, 2011 – Draft 3

Personal Health Records: Another Path to Empowerment

 

Just this week, I prepared for my PV follow-up visit with my oncologist by printing out computer-generated graphs of my cbc results over the last 5 years. The graphs included labels indicating when I had started and stopped HU and made changes to my dose of interferon. See below for one of the graphs I brought with me to the visit.

 

 

 

Using this handy graphical representation of my response to treatment, both my oncologist and I were able to "see" where I was in my treatment. As a physician myself, I have an advantage, as I have more understanding than a typical patient about the meaning of blood tests and medical events. Also, my oncologist, who is on the Brown Medical School faculty, knew me as a colleague for many years before I became his patient. We respect each other’s expertise, and once I became a patient, we had long conversations about my PV and its likely course and prognosis. I bring him articles and share the latest findings from hematology/oncology meetings, which he appreciates. He once remarked that he should get continuing medical educational credits for my visits with him!

 

As a physician, it has always been important for me to feel prepared so I was making the most informed decisions with my patients. This need for preparation has carried over to how I approach the management of my own condition. Having reviewed the graphs the night before, I was prepared to remind my doctor that we had started Pegasys 2 years ago, and that we had made the last dose adjustment in May. We looked at the graphs together, which showed that my PV remission, initially achieved with high doses of Pegasys, has been maintained as I have gradually reduced my weekly dose. The time we saved by not having to search through my chart for the dates and data was devoted to discussing my symptoms, feelings and my preferences for treatment. We agreed to continue a slow taper of Pegasys and to recheck my JAK2 allele burden once i completed 6 months at my current dose. My oncologist marveled at my quite rudimentary spreadsheet, created from an online Personal Health Record (PHR) program. He asked me if he could make a copy of the graphs to scan into my chart, remarking, "I wish all my patients brought in graphs like these!" The good news is that we all can! And, there is evidence that if we monitor and track our own medical data, we can improve the quality and safety of our care.

 

In previous columns, I have focused on strategies that we, as patients, can use to help us get the most out of our visits with our doctors and other members of our health care team.  Preparing for clinic visits, asking questions, sharing concerns, and being assertive about our needs are strategies that can help us to take a more active role in decisions about our care, and can help us to learn to cope with and manage our conditions. This is one path to empowerment, one that takes advantage of interactions with members of our health care team. Yet, many of us see our doctors only a few times a year, and there may be only a few minutes available for us to use these strategies, even if our doctor obliges. Thankfully, PHRs are available to help us take a more active role in our care.

 

PHRs are health records that are designed to be used by patients, in contrast to medical records created by doctors, hospitals or clinics to keep track of and document our health history and care. I'm sure most of you have seen at least snippets of your doctor's chart notes or an oncologist's consultation note, or perhaps a lab or x-ray report. These medical records are full of highly technical language and obscure abbreviations that only a health care professional can fully understand. Before the advent of electronic health records (EHRs), many were illegible, too!  Because these "clinician-facing" records are not understandable to most of us, they have limited utility for helping us to manage our conditions. As an example, I recently got a copy of my eye exam after developing some new visual symptoms. Despite being a doctor and also the son of an eye doctor, I couldn’t understand all the notations and abbreviations used to document the findings from my exam! And, unless you currently get your care in a very forward thinking health care organization, these medical records usually don't provide graphs like the one I created myself. They are even less likely to include the information that may be most meaningful to you, like the names and contact information of key people in your lives, your use of non-traditional forms of healing, or your health care preferences. And they are even less likely to mention your life goals and values (e.g., what's really, really, important to you) or your ideas for optimizing your health (e.g., engaging in more physical activity; spending time with grandkids).  PHRs, because they are designed for you, often include this information, and more!

Typically, PHRs help you to keep track of key health information, including data about your:

•   allergies and adverse drug reactions;

•   chronic conditions (including your MPN);

•   family history;

•   illnesses and hospitalizations;

•   laboratory test results, imaging reports (e.g. x-ray), pathology reports (e.g., bone marrow biopsy results);

•   immunization records and records of preventive screening tests (e.g., mammography results);

•   medications and dosing, including over the counter medications and herbal remedies; and

•   surgeries and other procedures.

 

Having all of this information available to share with new providers, or in emergencies, is invaluable and can reduce medical errors that result from depending on our memory at a time when we are ill or stressed. Simply have this historical data in an easily accessible form can be empowering, both to us and our health care team.

 

Some PHRs, particularly electronic versions, go a lot further than just storing key health information and data. These advanced PHRs are interactive and provide electronic links to relevant health information, offer tools and resources for self-management, warn you about potential drug-drug interactions, remind you to obtain medication refills and obtain needed tests, and allow you to make appointments with your providers. Some even provide you with access to your providers through secure electronic messaging, a form of email that protects your privacy, allowing you to ask questions of your health care team or report concerns directly to them. Being able to communicate with your health care team between face-to-face visits and outside of the limitations of telephone calls is freeing and, in systems that embrace this approach to communication, increases the chances that you can get the information you need in a timely way. Now that's empowering!

 

A colleague and friend, Susan Woods, MD, works in the area of Medical Informatics, en emerging new field that focuses on using information technology to enhance the quality of medical care. Sue has a blog called Shared Health Data http://www.sharedhealthdata.com/ that I highly recommend as a source of news and developments in this rapidly growing field. Several columns on her blog focus on PHRs and other "patient-facing" medical informatics tools.

For an example of a PHR that you can complete online and download, see  http://howsyourhealth.com/. This site, which was developed by health care professionals at Dartmouth Medical School, uses questions and assessments to gather data about your history, symptoms and function and then provides you with feedback and links to resources. Some health care plans and communities allow you to share your howsyourhealth record with your providers. Other online PHRs and related tools are available through Microsoft HealthVault at http://www.microsoft.com/en-us/healthvault/.

 

I am curious to know how members of our MPN community are utilizing PHRs and related tools. Please share your experiences, ideas and comments here.

New Posting of The Empowered Patient on MPN Forum

The September issue of MPN Forum, an online forum for patients with myeloprolifeative neoplasms. included a column entitled, "Can Clinicians Empower Patients?" and is based on a previous post here.

Enjoy and please comment either here on on the Forum. The link to the column is: http://mpnforum.com/2011/10/12/the-empowered-patient-the-clinicians-role/



Michael

New Monograph on Communicating Risks and Benefits

For your interest, the Risk Communication Advisory Committee of the FDA recently published a monograph, entitled "Communicating Risks and Benefits: An Evidence-Based User's Guide". This is a valuable resource that provides readers, clinicians and public health folks with guidance about how to understand, interpret and communicate about risk. It is relevant to our discussion about the risk information provided by 23andMe and other genomic profiling services. I was fortunate to have the opportunity to serve on this committee, learn about this important topic and contribute to this effort.

Click on the title of this post or paste the link below into your browser to peruse or download the monograph:

http://www.fda.gov/downloads/AboutFDA/ReportsManualsForms/Reports/UCM268069.pdf

New Column in MPN Forum

I have published a revised version of my "Being Heard" blog post in the August issue of MPN Forum. Click on the title to get to the column and the newsletter.

Michael

Being Heard

The following post was originally posted to the MPD Chat Listserve on July 7, 2011 as the 3rd installment of the collumn: Communicating and Connecting: Getting What You Need From Your Health Care Team

Being Heard – Number 3

In my last column, published on MPDchat on June 23, 2011, I offered some suggestions for questions that you might ask your docs and health care team members so you have the information you need to fully participate in health care decisions. This column offers some suggestions when your clinician is not responsive to our needs.

I know some docs respond with impatience or get annoyed when we tell them we have questions or that we need to engage in a discussion about our condition or treatment options. Some clinicians get defensive and feel threatened if we bring information or research findings from online sources, such as the MPDchat listserve or MPD Forum. Many health care professionals may be uncomfortable if we know something that they don’t. However, these are not excuses for being short or dismissive. It is my view that physicians should take whatever time is necessary to address our questions and concerns, or perhaps set up a follow-up to allow for a longer discussion. At a minimum, they should refer us to someone in their practice or clinic who has the time to respond to our needs.

Having said that, I know it may be hard to be assertive and speak up and ask for what we need. Even though I am a physician myself, I take time to prepare for my medical appointments even though I have a very responsive and personable oncologist.

So, here are some suggestions for how to help your doctors engage respond to your questions, concerns, or needs:

• Prepare for the visit by writing down your specific concerns and questions. Prioritize them so you can be sure to ask the most important one or two.

• Ask permission to ask questions or to share concerns or information. At some point early on in the visit, say: "Doctor....I have some concerns (or questions) that I would like to share with you about the treatment you have recommended (or we have planned). Would it be ok if I shared them with you? Most docs will say yes...and then you can ask questions and share your concerns [see suggestion below]. If he/she says no....you might have to say, "I don't feel comfortable moving forward with the plan while I have unaddressed concerns". Hopefully, this will trigger a response. If not, you might have to ask "Who else in the practice/clinic can address my concerns?"

• Share your discomfort/worry/concerns: "Doctor, I need to tell you that I am worried about xxxx and xxxx." If they change the subject or give an inadequate response, give the doc a second chance and repeat the statement. If you get a defensive response, you might say, "I know there is no way to eliminate all the worry...however, I'd appreciate knowing your ideas for helping me get through this". Finally you might ask, "What would you suggest I do to address my remaining concerns?" Hopefully, they will respond with something thoughtful, offer a referral or second opinion, or at least offer increased monitoring or ways to check up on you.


• For those docs who jump right in as soon as they walk in the exam room and start their evaluation and exam, you might need to prepare a way to share your agenda at the very beginning of the visit, for example, "Hi….before we get started today, would it be ok if I told you what was important for me to accomplish today?

• If you have a sense that it is time pressure that is getting in the way, you might say, “I know you are pressed for time, so I thought you might want to know what I am most concerned about…(wait for response); or:” I really value the time we have together to review the management of my condition. So, before you tell me what you would like to get done today, I’d like to tell you what I need. Is that ok?”

• Let your team know that you have been doing some reading or checking online, and share the source of the information. (e.g., moderated online support group; medical journal article, medical news service, national cancer institute site, etc.). Bring a copy of the article or reference with you. Again, ask permission to share it with your doctor. ("I found some useful information that I would like to share with you from[mention source]. Are you willing to review it and give me your opinion?" Again, if they say no, share your concern about this and ask whether someone else inside or outside the practice would review the material you have brought.

• Ask for increased monitoring and follow-up. If you have any remaining concerns or worries, ask for ways you might get in touch with your treatment team to get help for any problems that arise and make sure you have a follow-up appointment before you leave. You can ask, "Who should I connect with if I have a problem or question? What is the best way to get through?"

I hope these suggestions are helpful for helping you have more productive conversations with you health care professionals. As always, I am interested in your ideas and experience. Let us know what works for you.

Best wishes,

Michael

Questions are the Answer

I have posted the second installment of my column on the MPD Chat listserve below. Though this column is written for members of the myeloproliferative disorders community, my suggestions apply across all conditions. A previoius post on this blog contains similarPlease leave a comment or offer your ideas for questions that patients might ask to enhance their participation in care.

June 23, 2011 – Number 2

The National Patient Safety Foundation's Ask Me 3 campaign (see: http://www.npsf.org/askme3/) encourages patients to ask 3 questions of their health card team to increase their understanding of their health conditions and what to do about them. The 3 questions are:

1. What is my main problem?
2. What do I need to do?
3. Why is it important for me to do this?

Though these questions are good ones, I view the The Ask Me 3 questions as a minimalist approach for promoting clinician-patient communication, patient understanding and enhanced patient capacity to manage their conditions. These questions will help you get your clinicians' view of what you need to know, including their impression of what ails you (e.g., a diagnosis) and the options for managing your condition. Hopefully, if you ask the second question, you will learn not just about treatments, but also self-management options (i.e., what you can do to manage your condition). These questions hopefully will lead to a discussion and not just a lecture.

However, many clinicians do not have the inclination or skill to respond to these basic questions well. So, you may want to bring some additional questions. Here are a few others you might want to consider asking:

• "What else might be going on to explain my symptoms, examination and test results?" Ask "what else?" at least twice. Dr. Jerome Groopman, the noted oncologist and writer thinks "what else?" is one of THE most important questions you can ask. Asking "what else" actually helps clinicians to reflect and consider possibilities they might have prematurely rejected in their efforts to "make" a diagnoses.
• "What aspects of my presentation are not well explained by your diagnosis?" "Presentation"" is a word that clinicians use to convey the combination of symptoms, physical examination findings, and lab tests. They will be impressed if you use this word! Again, you are helping them to reflect and consider what doesn't fit their conceptualization.
• "How sure are you that this is my main problem?"
• "What tests would help you to be more sure?" For those of us with MPNs, you can get more specific and ask about JAK2 testing, bone marrow biopsies, imaging tests, etc.
• "How useful would it be to see another doctor who has more experience treating patient with my condition?" This is especially important question for us, since MPNs are relatively uncommon and only those who treat many MPN patients are aware of new and emerging treatments.
• "What are other treatment options?" This is similar to the "what else could it be?" question in helping the clinician expand his/her thinking about possible treatments.
• "What are the pros and cons of the treatment options?" Many clinicians minimize the down side - but it is important that you make fully informed choices that include an understanding of the risks and benefits.
• "What things can I do, (besides taking medication or undergoing other treatments) that will help me to manage my condition and have the best chance of maintaining my function?" Hopefully, this will lead to a discussion of strategies that may enhance your capacity to monitor you condition, maximize your well-being and function (e.g. eating well, being physically active, paciing oneself, etc.)
  

I realize that it may be challenging to ask ALL of these questions in a single visit...and some clinicians my bristle or balk if you pull out a list or ask too many questions. That kind of reaction is regrettable. After all, this is your life, your health, your condition! The doc may be the expert on the condition and treatment, but you are the expert about you!. Clinicians have the knowledge about what to prescribe. Yet, to effectively manage a condition, especially a MPN, you need to learn how to monitor, manage, cope and adapt.

I hope you will share your own favorite questions here....

Asking is the first step. As the US Agency for Healthcare Research and Qualtiy has said in their ads, "Questions are the Answer!" see: http://www.ahrq.gov/questionsaretheanswer/

Next column, I'll discuss what patients and caregivers can do if their clinician is reluctant to answer questions or hesitant to consider alternative diagnoses, treatments, referrals or self-management education.

Best wishes,
Michael