Empowered or Powerful? My Mini-Lesson from Jessie Gruman.

In a post on this blog over 3 years ago, Can Clinicians Empower Patients?, I noted that many who work in the area of patient engagement, including Jessie Gruman, the founder of the Center for Advancing Health, believe that clinicians can't empower patients, only patients can empower patients.

Though I understand the argument that patients already have substantial power and ultimately are already in control over whether to follow through with treatment and self-care, I believe that clinicians can take proactive steps to encourage patients to be more engaged in decision and care.

Why ask clinicians to "empower patients"? Though it is desirable for patients to take an active, and even the lead role in health care decisions and plans, many are reluctant to take charge or feel unprepared or unsure about how to play a more active role in self-care and self-management of chronic conditions. (See an article by Wendy Levinson and colleagues for data on patient preferences for involvement in decision making.)

Clinicians can help their patients understand the benefits of active involvement in decisions and self-care. Engaging patients in decisions and care is even more valuable when patients have serious life-threatening illnesses or chronic conditions that require ongoing self-management. Self-management can be quite challenging for any person with a single chronic condition and most people, particularly older adults, have multiple chronic conditions that they must manage simultaneously.

Self-management requires considerable expertise, effort, energy, expertise, coping, problem-solving and juggling. I have only 2 chronic conditions, yet I have spent a lot of time and energy on learning and actively managing my conditions.

Moreover, when clinicians actively include patients in the decision making and care, they are also "supporting autonomy", which has been recognized as an important determinant of motivation and subsequent behavior change. (Patrick & Williams, 2012) Supporting autonomy and building partnerships with patients are key elements of  Self-Determination Theory, Motivational Interviewing and models of Shared Decision Making.

In my teaching and writing, I have used the term, "empowering patients" as a way of helping clinicians consider inviting patients to participate in decisions and learn strategies that will increase their capacity to manage their conditions and stay well.

Last April, however, my views about using the term, empowering patients, changed forever. In April, I had the opportunity to chat briefly with Jessie Gruman just after she was awarded the inaugural Jessie Gruman Health Engagement Award at the Society of Behavioral Medicine (SBM) Annual Meeting in Philadelphia.  During the award ceremony, the SBM Board acknowledged and celebrated Jessie's  wisdom, guidance and lifetime contributions to the fields of both behavioral medicine and health engagement. See my previous EmpathyWorks post for more on Jessie's legacy.

Jessie's death in July, 2014 was a huge loss for all those who advocate for greater patient engagement in care, though her legacy lives on through the Center for AdvancingHealth.

Jessie has written passionately about the importance of understanding what it is like for patients to live with a chronic condition and what they need to be successful in coping with illness. In a blog post written at about the same time she received the SBM Health Engagement award, Jessie wrote:

"The idea that I should "manage" my chronic disease has always struck me as optimistic daffiness on the part of those who want me to do this...My image of having a serious chronic disease is of a cowboy riding a rodeo bull.....You call that management? No. But it gives you a pretty good idea of what it feels like to have a serious chronic disease. Most of us are just trying not to fall off the damn bull."

During our brief conversation at SBM, Jessie reminded me of the importance of viewing patients as the source of power for promoting health. She understood that, from the patient's perspective, the clinician can't empower a patient. Offering education, sharing decisions, and teaching self-management skills only go so far. Power comes not from the clinician, or a caregiver; it comes from within. Patients are already powerful, though they can become more prepared and skilled when they seek information, participate in decisions, prepare for visits, and learn and practice self-care skills.

Clinicians can empower health, not patients.  Patients are already powerful!

Jessie Gruman: A True Champion for Patient Engagement

Jessie Gruman has been a outspoken and articulate advocate for people's engagement in health care for several decades. Actually, Jessie is more than an advocate. She is a visionary, a beacon, a once in a lifetime voice for millions of patients and caregivers who struggle with serious health care conditions.

Jessie is the founder and president of the Center for Advancing Health which, since 1992, has has focused people’s engagement in their health care from the patient perspective. Prior to founding CFAH, Jessie addressed health engagement, as well as the effects of behavior on health for the public sector (National Institutes of Health),  the voluntary health sector (American Cancer Society) and the private sector (AT&T).

In April, I had the opportunity to chat briefly with Jessie at the Society of Behavioral Medicine (SBM) Annual Meeting in Philadelphia. During this year's meeting, the SBM Board acknowledged and celebrated Jessie's lifetime contributions to health engagement by awarding her the inaugural Jessie Gruman Health Engagement Award.

In a moving brief ceremony, Jessie was acknowledged for her passionate and highly effective advocacy as well as for her wisdom, guidance  and contributions to the fields of both behavioral medicine and health engagement.

The Center for Advancing Health website is a great place to find research reviews, policy briefs, news, blogs and fabulous resources on patient and caregiver engagement, as well as other topical health care issues. If you visit, you will have a hard time leaving and you won't be able to avoid bookmarking at least 1 of the resources you will find there.

Be sure to sample Jessie's Prepared Patient Blog. Jessie makes frequent entries, often sharing stories about her own experiences coping with 5 life-threatening conditions. The Prepared Patient Blog also features guest bloggers, including leaders in the fields of health engagement, health policy, patient advocacy and health behavior change.

I also recommend Jessie's books, written from the patient perspective, chronically her journey as a patient and her insights as a researcher, advocate, consultant and policy expert. Her books include:

• Aftershock: When the Doctor Gives you - or Someone You Love - a Devastating Diagnosis (2007), 
• Cancer Survivorship: What I Wish I'd Known Earlier (2013)
• Slow Leaks: Missed Opportunities to Encourage Our Engagement in Health Care (2013)
• A Year of Living Sickishly: A Patient Reflects (2013) 

I will share more about Jessie, CFAH and The Prepared Patient Blog in upcoming posts.

Don Berwick Urges UK's NHS to Emphasize Empathy

In a report commissioned by the British National Health Service (NHS) to address  concerns about recent slippage in NHS's patient safety and quality ratings, Dr. Donald Berwick  encouraged NHS leaders to focus on empathy, compassion and support for both patients and health care teams.

Helen Riess provides her perspective on the report in her blog post for The Huffington Post- http://m.huffpost.com/us/entry/3757483

Health Coaching: A Road to Empowerment

See my latest The Empowered Patient column in the October 15th issue of MPNforum. MPNforum October 15, 2012 - The Empowered Patient.

In the column, I share my personal experience with health coaching as well as my reflections about the qualities to look for in a coach. In sum, "Great coaches empower us by helping us to build the self-monitoring, self-assessment and problem-solving skills that we need to achieve long term success."

Barbara Ficarra on the Value of Empathy

See Barbara Ficarra's post on her Huntington Post blog on the value of empathy.

The Joy of Throwing - New Post on MPNforum

See my latest column in the Summer Supplement to MPNforum. It's entitled the Joy of Throwing and chronicles my recent efforts to qualify for the National Senior Games in 2013. Go to: MPNforum

Graphic on Mind the Gap Emphasizes Impact of Clinician-Patient Communication

A new posting on the blog, Mind the Gap, by Stephen Wilkins, graphically shows the value of good clinician-patient communication. See: Mind the Gap Graphic.

I really like the quote he included from George Bernard Shaw, "The problem with communication is the illusion that it has occurred".

Shaw's quote reflects a key finding from research on clinician-patient communication: clinicians who have lover levels of skill are least likely to be aware of their skill deficit. For example, a review on the effectiveness of self-assessment of learner needs by I. Colthart and colleages (Medical Teacher, 30(2):124-45, 2008) found evidence that that the least competent are also the least able to self-assess accurately. This is why we can't count on clinician self-report and need to assess the competency of clinicians using methods that provide direct evidence of clinician communication skills, such as audio or videos of actual encounters,  evaluations of simulated encounters, assessment of patient experience. (See: Levinson et al.,  Health Aff (Millwood) 29(7): 1310-8.)

The good news is that the accuracy of self-assessment can be enhanced by feedback, particularly video and verbal feedback.

Too much talking | QReview

Follow this link Too much talking | QReview to a blog post about the importance of  eliciting understanding, concerns and beliefs and listening, rather than just telling.

The author, Dr. Susan Shaw, is Chair, Health Quality Council and Department Head, Adult Critical Care, for the Saskatoon Health Region in Canada.

The post originally appeared on Q Review, a blog published by theThe Health Quality Council (HQC). HQC is an independent agency that measures and reports on quality of care in Saskatchewan, promotes improvement, and engages its partners in building a better health system.

Several Recent Articles Stress the Value of Empathy in Medical Care.

The importance of empathy in medical care is the focus of several articles recently published in the medical literature. See below for a brief comment on each and a link or reference to the article.

In an article that appeared in the March, 2012 issue of Perspectives on Psychological Science, Hacque and Waytz include empathy reduction in clinicians as one of the "causes of dehumanization" in medicine. They suggest that clinicians have difficulty being empathic when actively engaged in demanding cognitive processes, such as diagnostic reasoning and problem solving. Empathy reduction can be countered, however, by strategies which promote clinician awareness of the human and emotional aspects of patient care, such as learning about the whole patient (e.g., interests, roles, values, preferences) and recognizing the dehumanizing aspects of medical settings, technology and the procedural elements of care. The article citation is: Hacque, OS, Waytz A. Dehumanization in Medicine: Causes, Solutions, and Functions. Perspectives on Psychological Science March 2012 vol. 7 no. 2 176-186. doi: 10.1177/1745691611429706                                 

In the May, 2012 issue of the Journal of General Internal Medicine, Helen Reiss and colleagues reported that training in empathy improves physician use of empathic skills. Reiss reports that providing three 60-minute empathy training modules to residents and fellows (physicians undergoing specialty training post medical school) produced significantly greater changes in a patient-rated measure of empathy than residents undergoing standard training. Trained physicians also showed greater changes in their ability to decode facial expressions of emotion. An abstract of the article can be found at: http://www.ncbi.nlm.nih.gov/pubmed/22549298

And, the most inspiring article of the recent articles was written by Bernie Lown, MD's on his personal blog. See: http://bernardlown.wordpress.com/2012/04/29/social-responsibility-of-physicians/ . Bernie is a renowned cardiologist, educator and researcher who has been a proponent of patient-centered care for 60 + years! Dr. Lown is a leading voice in medical ethics and social responsibility and was a recipient of the Nobel Peace Prize for his leadership of the Physicians for Social Responsibility during this organization's campaign to educate the public about the medical consequences of a nuclear catastrophe. He has also been an outspoken critic of overtreatment and
unnecessary use of medical technology, especially in advancing cardiovascular health,  and has emphasized the value of addressing health behaviors and promoting patient engagement and empowerment in his publications. The current article is a transcript of his address to the April, 2012 Avoiding Avoidable Care Conference held in Cambridge, MA. (See http://avoidablecare.org/ for more on the conference). Here is my favorite section:

Sixty years of doctoring has taught me that taking a history, namely listening, is the quintessential part of doctoring. Proper listening is a skill, an art and a core element of medical professionalism. History taking is far more than providing key elements for a diagnosis. It is the basis for nurturing trust. I am persuaded that nothing of science taught to medical students is as difficult to master as is the fine art of listening.

Top 10 Ways to Be More Empowered: New Post in MPNForum, April, 2012

My latest column in the April, 2012 issue of MPN Forum lists my top 10 strategies for empowerment. As I approach 60, I plan to employ these strategies to help me to stay well and manage my health conditions. I hope you will find them useful as well.

See Top 10 Ways to Be More Empowered

Participatory Health Care: Maastricht University show what it can look like.

I followed a link from a comment to the most recent posting by Stephen Wilkens in his Mind the Gap blog ( Mind the Gap - Patient Enagement - Feb 2012 ) that demonstrated what articipatory health care can look like. It's also a model of an effective brief presentation on the value of a more patient-centered approach in health care.

Thanks to TED and Maastricht University, a world leader in patient-centered care and health professional education for producing this video. See also the TEDxMaastricht site ( TEDxMaastricht 2011 Inspiration Videos ) for several other excellent videos from their 2011 event on participatory health care. If you search around on their site, you will also find information on their planned April 2012 event.

New post in The Empowered Patient on Informed Decision Making

See the latest "The Empowered Patient" column in the January issue of MPN Forum, an online magazine that features stories and news about myeloproliferative neoplasms. In my column, I share personal experiences with shared decision making and offer some background information about the process of informed medical decision making. The column can be found at: www.mpnforum.com/the-empowered-patient-january/. You can find a link to MPN Forum in my favorites on the right side of this page. I have added a link to the Foundation for Informed Medical Decision Making in my favorites as well. Check it out for excellent information and news.

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

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