Health Literacy and HARCX



Health Literacy is a loaded term. Every individual learns and or absorbs information differently. Some people learn more easily from informatics or healthcare visualizations, others appreciate researching diagnostic terms and or symptoms particular to the condition they are seeking reliable information on. Everyone is different, our DNA is not the same, our built and natural environments are all across the socio-economic strata, many variables to individual exposures, possible harms and or hazards. Social determinants of health is a current buzz term in health services, though in fact we have known (probably forever) that what happens outside the clinic is actually the larger piece of the pie when we are talking about health determinants or social – health outcome probabilities.

I recently had the opportunity to attend the 10th Annual Health Literacy Conference HARCX in Bethesda, MD. Boston University Medical Center organizes this research focused, educational conference. (@HlitConference) A number of PCORI Ambassadors attended the conference, we reviewed abstracts before the HARCX, asked questions during plenaries and workshops, reviewed posters during the poster session and wrote up our thoughts afterwards.

Healthy People 2020 defines health literacy as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.”

International Health Literacy Associations  IHLA expert Stan Hudson is a health literacy and health policy expert who is actively recruiting individuals who are interested in HL to come aboard with IHLA “Over the last decade he has led the development and implementation of health literacy education programs and curricula for consumers, health professionals, public health agents, consumer advocates, and health educators.”

The Health Literacy Tool Shed was one offering I was not really familiar with before the conference, this is an important tool for anyone interested in health education and health literacy: Found here:

There were a number of national to internationally known speakers sharing their focus or specialized interest areas in health literacy throughout plenaries, workshops and available to talk with during networking and or poster sessions. More here:

I would like to thank HARC organizers and conference leadership: Michael Paasche-Orlow, Lori Henault, Katherine Waite and all the BUMC Health Literacy staff who help to bring the issue of health literacy to the forefront of health research, include patient centeredness at the core of their work and for including patients and family caregivers at their HARC conferences providing a learning opportunity for all.

Health Literacy and PCOR 2017

Danny ‘s Blog : 2018 Healthcare Literacy in Research Conference


Thoughts on Martin Niemöller, Stress and Stigma, Being Good Neighbors and Accountability

Stress and stigma are known drivers or contributors to poor health outcomes.  Decreases in physical and mental positive health outcomes are recognized because of stress and or stigma, and is documented both in the clinical arena and in the data. Are we held accountable for our actions, personally or externally, well intentioned or not? How can we work to decrease stress and stigma in our daily lives?

So much is happening in the world today that no matter what socioeconomic, ethnic, regional, and or identifying group¹ you are from, you are facing more daily stressors, either from your environment, your work, your family, your own centralized world. How can we handle these stressors? Is speaking out for an individual or group who you see is being targeted, good for your physical and mental health? I believe so, I believe there is some data to back this as well, self activation and positive action autonomy. Overall though, one might feel that their voice does not matter or they are ‘shushed’ ~ so not heard, or cultural norms do not translate easily when trying to express oneself to another identifying group or group member. The Golden Rule is beautiful though very few actually practice it. Stigma happens and gets in the way of individuals every day lives, it exists in their living rooms, classrooms, just about rooms of any kind, including the great outdoors rooms of nature.

Stigma has been at the forefront of my mind these last few weeks, after hearing Dr. Daniel Goldberg JD PhD² @prof_goldberg speak on this subject at the Behavioral Health and Social Justice Global Alliance conference in Denver at Anschutz, and then too hearing on stigma again at the University of Washington from Dr. Deepa Rao³ PhD MA at the Lancet Commissions US roll out on Action on Global Mental Health .

In light of what has happened in America over the last few days, I have found myself reflecting on Martin Niemöllers famous words that are so often recited when unexpected horrors hit our communities once again. I would like to posit that silence is still the more common action that exists in most communities, exception for the activists and some advocates. The activists and advocates cannot be the only voices from either side, whether left or right, people waving signs, marching, attending rallies and we have people that will remain silent because of perceived or real necessity for self protection. Many individuals simply do not feel comfortable, and some do not feel safe going out to marches or rallies, and some have just quit outward actions due to the apathy they feel after seeing so little positive movement or because of the railroading of the issue by people whose interests might be self serving and or appear to not really be for the common good. When an individual might depart from the front line issue group, they are usually left to be alone, ignored and even ostracized, not comforted nor embraced after they try and share why they have left.

First they came for the socialists, and I did not speak out—
Because I was not a socialist.
Then they came for the trade unionists, and I did not speak out—
Because I was not a trade unionist.
Then they came for the Jews, and I did not speak out—
Because I was not a Jew.
Then they came for me—and there was no one left to speak for me.

Stigma against individuals and groups can occur after speaking out, after utilizing ones Amendments rights, hate can occur from and within both sides, there are wrongs and rights according to social and cultural norms. It is my understanding though that violating anyone’s personal space, harming them through thefts, destruction of property and or physical actions is illegal and should be addressed if known about before the action happens so hopefully the harm never manifests itself in the first place.

Transparency and personal accountability are lacking it seems to me, and there really is too much silence against stigma and hate speech that is too common place in the rhetoric of todays world. Are we afraid of stigma from our peers if we speak out? Is there stress from retaliation and or is the retaliation ignored by ones neighbors? Why is there so much hate speech and actions currently existing in our neighborhoods, is it because we are stressed and afraid of the Stigma if we do speak out, is our future going to turn out similar to Niemöller’s era and later to his famous quote? Just some thoughts.



More Reading and References:

  1. Stigma as a Fundamental Cause of Population Health Inequalities                                                   
  2. Dr Daniel Goldberg ‘Pain, objectivity and history: understanding pain stigma’                                                        
  3. Dr. Deepa Rao’s UW Global Health Project on Stigma

What’s Next ? Goals and Our Health Journeys

alex-guillaume-769172-unsplashI expect many of us set goals for bringing about better health outcomes for ourselves and also for others.  No matter if you are a clinician, a patient, or a caregiver there are all too often more questions regarding health issues, than easy answers. What factors or specifics do we chose to work on to prioritize to then modify, change or treat when seeking better health outcomes?

I love to research health conditions, prognoses, evidence based treatments: allopathic and complementary. Sometimes I research out of curiosity to learn more about a health something I have not heard about before, sometimes regarding my own health needs or a friends current need. I personally set health goals after I have taken time to investigate, synthesize and analyze what my Primary Care Team, Specialist and Google Scholar/ PubMed line has shared or advised.

Am I an activated educated patient? I like to think so, though I know I do not follow my set health goals as well as I hope to and or would prefer to. How can I or we judge, or expect others along their healthcare journey to be ‘compliant’ to their own goals when we fully recognize our own small and large goal failures. Time Flies, it really does.

I have a situation where for almost a decade I have been living with a health condition that has been persistent despite my compliance over most of the years. Now this journey will take a turn and my health outcome goals have changed, we change… and so will our goals.

Until next time, I suggest we might think about how to stay dry when our personal issues may pour down upon us, think creatively to go forward and bring some much needed color to our diets, our lives, the community. Walk forward and carry a big umbrella.


Thank you unsplash photographers:                                                                                                    Alex Guillaume @alx2bgx and Alex Presa




Staying Cool in an Ever Increasing Heated Environment


Aging offers us opportunities to live through many changes within our environments, experience life to its fullest, to hopefully use our gained wisdom effectively.

As youth we might enjoy and play in the sun, not realizing that extended exposure to sunlight may cause serious problems later in our life, reality. We scoffed at warnings about wrinkled skin, possible skin cancer all the while relishing in the invincibility that often accompanies youth. We slathered baby oil and Ban de Soleil on our skin not covered by the bathing suit, baking (perhaps literally frying) our bodies. We did not listen to our elders, nor the ‘evidence’ regarding the costs that extended sun exposure can cause. In our youth we could stay in the sun and withstand the heat of the summer, almost all day long, provided we stayed hydrated and shaded for at least part of the day.

When one embraces the rich ages of 50-60 and above, one should know that sunlight is something to avoid excess exposure to, though benefits from the use of in collecting enough rays to keep up ones vitamin D levels. Advancing vitamin absorption rates,  general well being and simple cheerful enjoyment that exposure to sunlight typically brings to us as humans is accepted. Prolonged heat exposure can be dangerous to elders, not just excessive sunlight.  Once again, hydration and shade are needed, actually necessary for survival.

As we age our internal thermostats start breaking down. Unfortunately there is no human air conditioning service to call, to visit and fix keeping our bodies cool from the inside out, outside in. Aging brings a host of challenges, and staying cool during the long hot summers is one of them. It is not about staying away from sunlight (wrinkle warnings long gone by at this life point) it is a matter of keeping ones inner thermostat working, recognizing when to hydrate, when to get out of the heat, and or sun.

Keeping hydrated brings another host of issues, and when one ages they might at times prefer drinking less water than more. Personal preferences aside, staying hydrated is an imperative to keeping our inner thermostat working properly. Medications, illness, compromised immune systems and simply the aging process affect us all in unique ways, it is important to remember that excessive heat and sunlight exposures can cause adverse events, and much quicker than when one was decades younger.  Lastly, some vanity issues stay with us all of our lives, so elder adults are most likely not as comfortable wearing tank tops and shorts when having reached 60 as one does not look the same as one had looked when 20.

Keeping cool headed is also a benefit when we age. Using our wisdom and gained knowledge in response to heated circumstances, to stay ‘chilled’ as they say, is a smart way to respond to almost any situation. Take sun in moderation, carry a fan, stay hydrated and share your life wisdom with others while hoping that we all might listen to our elders, their experiences and enjoy your summer!


More to read on heat exposure and age:                                                                                           Hyperthermia and cardiovascular strain during an extreme heat exposure in young versus older adults

Heat stress in older individuals and patients with common chronic diseases

Thank you! @JéanBéller unsplash photo credit Mt Rainier


Values, Preferences and Goals: Diagnoses and Outcomes



What makes you happy with your health care experience? Do you feel satisfied after meeting with your clinician? Did you forget to mention something you had planned to discuss with your clinician or at least share about? Did you feel like your clinician listened to you? Are you able to access your clinical notes effectively afterwards? You are not alone, no matter how you answered these questions.

The terms ‘activated patients’ or ‘patient partners’ are real. The onus for ‘good care’ is really on the patient and or caregiver who participates with, and or assists the patient. The clinicians main job is to listen, diagnose and treat.

listen: The patient should ask questions at every step during an appointment. If the clinician does not reiterate back with the patient exactly what had been shared, had not articulated effectively what the medical concern is, then it is up to the patient to correct the clinician. The onus is on the patient to present their medical issues and concerns as clinicians are not mind readers. Patients should share their values, preferences and goals regarding their care specifics. Clinicians should listen to the patients concerns and symptoms, their preferred choices and work in a partnership with patients, not separate from.

diagnose: Today in this modern day world of internet search engines, I would venture to guess a large amount of us have searched our medical condition before our scheduled appointment and often pondered over the worst possible diagnosis. We then perhaps attempted to sound like we understood what our outcomes might be for the symptoms we shared, when having met with our clinician. One benefit of searching out ones possible diagnoses and outcomes is that as patients, we realize that there are a number of possibilities that could be causing our symptoms. One negative of having searched our symptoms is that somewhere in the back of our brains we might have an ongoing nagging replay of searched possible worst outcomes, diseases that are rare and deadly even. Leave the diagnosis to the experts, leave it to the clinicians to provide the diagnosis after the proper tests and analysis has commenced. We are all human though, and many of us have been misdiagnosed and or know someone who has been.  One can be correctly diagnosed,  over diagnosed and or underdiagnosed. Only after ones appointment, and after reviewing ones lab and or radiological test results, ones clinicians notes and most likely again searching the internet does an activated, engaged patient feel content about their care and service. Patients are consumers after all. Being activated is to be curious as well as a critical thinker.

treat: As mentioned above, condition diagnosis should be left to the experts, so should ones treatment in care. The patient onus here, is one where patients should voice and express to clinicians their values, preferences and goals regarding their treatment options. Patients should express if they have negative or adverse affects to any medicines or treatment options and should state what is preferred best for their whole health, as patients know themselves best. Treatment will most likely be effective if it aligns with ones personal values, preferences and goals. Sometimes the goal is the most important treatment outcome, you might like more mobility, less headaches, no gastric upsets. Expressing ones desired goals, what is important to oneself, what mode of treatment one prefers is really what will matter in the end. If later you as the patient decide to change course there is room for that of course, though only if you are an activated, engaged patient and have an effective line of communication with your clinician.

Values, preferences and goals regarding health care delivery will change overtime. As a young adult you might have a goal to climb a mountain > even though you have asthma, a few years later you might worry about having healthy children and how to address this concern effectively, then in middle age one might be concerned about life balance and ones level of energy and stamina in the workplace and how best to address “keeping up”, and then around retirement age, ones health concerns become more complex in every way imaginable, even the unimaginable.

Thank you for reading this blog piece, if you are interested in becoming an activated, engaged patient look into the possibility of:

  1. Joining one of your health care facilities patient and family advisory councils
  2. Sign up to participate in quality improvement activities and or co-design opportunities
  3. Ask if there are patients serving in governance roles, your voice can make a positive difference at all levels
  4. Inquire about how to participate in health research activities that your health care facility might partner with

You will learn that by participating as an activated, engaged patient partner you will find yourself asking more questions about your own health, begin to think more critically and most likely will desire better health outcomes not only for yourself, though hope and work for better health outcomes for all.  I recommend going forward, if possible, for you to think about becoming an activated patient or caregiver, an engaged patient, as we can all do more.



Read more about Choosing Wisely 

Read more about Open Notes Initiative


Thank you Photo credits:                                                                                                                 Service                                                                                            Do more


It is All About Caring isn’t it? Happy Fathers Day



Today Sunday, June 17th, 2018  Muslim families are continuing their festive celebration of Eid ul Fttr,  (Eid= Holiday) marking the end of Ramadan. Ramadan is the Islamic month of recognition and devotion,  where around the globe, Muslims refrain from any ill will, negative thoughts, and fast of all food and drink from sunrise to sunset. At the conclusion of Ramadan, families attend large communal prayers and festivities, parents and Aunties/Uncles alike allow the children to eat ice cream before lunch these Eid days, a festive time of coming together, enjoying each other, catching up with friends we may only see once or twice a year, during Eids.

I was holding conversation with a non Muslim the other day, explaining how Muslims go from fasting 17+ hours a day to three days of celebration, feasting at Eid. So many sweets, so much food, so much play, that by the third day, (today) everyone is pretty much satiated of sweets and of conversation, have acquired enough hugs and cheek kisses compared to what seems a lifetime of love and care, where throats are hoarse from laughing. Babies are shared, transported arms to arms until they start crying, then whoever is holding that baby walks to find Mom to gently (with loving reluctance), hand over the precious baby. Soothing sounds and back patting fill the air. Islam and respect for families goes hand in hand, heart to heart. All elders in the Ummah (community) are Aunties and Uncles, are treated with respect, young Muslims hold hands to Aunties and bow their heads, the young boys are expected to greet and give Salams to Aunties and Uncles all. Aunties and Uncles often give out envelopes with $$ and or hand out sweets, yes more sweets.

225770_1809993328388_5810848_n dad and me

Today is also Fathers Day. My Father, an Army officer had a medical discharge while he and my Mother were awaiting my birth. Above photo was taken near Madison WS, (I was about three), where my father had brain surgery later that year to remove a large malignant tumor. Fathers day has always been kind of hard for me, after my Father had surgery he was a paraplegic where he could walk with a cane for a short time period, his cancer spread and he was then in a wheelchair, mostly in a hospital bed in our home, in and out of care facilities, where he would plead to come back home. Sometimes the extra care was just necessary, my Mom a nurse, took a much needed a rest, now and then. He wanted to pass at home and at the time this was something we could not effectively provide for him in 1965. I reflect at times on his care during these years, he passed when I was nine.

On both Fathers Day and Eid we try and find time to visit loved ones, who might be alone and or perhaps ill. After all, it is all about caring isn’t it? On Friday after compulsory Eid Salat (Prayers) I walked the short distance down to Pike Market to purchase a bouquet of flowers to take up the Seattle hill to give to an Auntie’s beloved son, (who is also a Father to two boys),  who is trached, and unwakened in a care facility along with many other loved persons, whose families are all praying that their treasured, very much missed family member will wake up soon, have the ability to share with them once again. Staff here are always friendly and helpful, this care facility is ‘worker owned’ an excellent model for best care. No one wants problems when they are owners, here the individuals receive better care, the facility seems to be of higher standards than others I have visited.

As I walked into the room, their space, their room, I gave cheerful greetings to the roommate and to my friends adult son and a Father. I talked mostly with my friends son, sharing the latest on the Eid prayers he was unable to attend, placed the colorful, joy filled flowers on his bedside table, and prayed with him as it was Duhr, (midday prayer time). The soft recitation of the Quran was filling the stillness of the room, a soothing background providing grace, a reassuring sound played by the dvd. I noticed he was a little hot when I touched him (80 degree day in Seattle!) so I placed a cool damp towel compress to his forehead, I repeated this as he appeared to embrace the coolness, relaxed at the recognized touch of someone who cares.

It is the small sincere acts of caring that can make a huge difference in someone’s life. In the same way that my friend’s son and a Father relished the cool compresses, recognizably appreciating this small act by visibly relaxing, I too benefited by having the opportunity to give, to receive happiness through sharing, his actions gifted to me showing he cared in the ways he is able.

When my Father became ill and unable to communicate in the manner most of us do, I saw how uncomfortable his unresponsive state made his friends, our neighbors, his visitors. I still made Fathers day cards for him, even after he was blind. I remember reading to him my handmade cards, even though he could not hear. A tear would fall down his cheek now and then. He knew I was there, present, as do my friends in this care facility, they know that you and I are present, that we care, and isn’t that all that really matters in both health care and in life?

Thank you for caring.


Evidence for caring was minimal, perhaps my search methods?

Assessment of needs, psychological impact and quality of life in families of patients with locked-in syndrome

* Excuse this next title though it is an interesting study and article of how USA vs Germany think of “disorders of consciousness” (DOC) and “unresponsive wakefulness syndrome” (UWS) Having lived as a child with my Father in this state I had heard many words to describe him and what should be done. 

The living dead? Perception of persons in the unresponsive wakefulness syndrome in Germany compared to the USA


Patient Partners at Medical and Health Research Conferences


Patient Partners at Medical Conferences

When: June is here! Three weeks until the official first day of Summer. June, it seems to me personally, is also Health Research and Policy Conference Month.

Where: I will be attending multiple conferences in the next four weeks. I am grateful to be attending and participating in these conferences as an engaged patient partner¹ in health systems improvement research.

Why: I hope to be able to contribute meaningfully at the upcoming conferences, expand my knowledge on the latest best evidence practices, network effectively, and disseminate relevant learned knowledge back into the communities where I engage every day, on social media and face to face.

What: There are a number of considerations to discuss when developing your plan to invite and include patients to medical and research conferences. What is your reason or goal to include patients, what outcomes are you hoping for? How do you plan to find engaged interested patients to attend? Be sure to think about inclusion and diversity when inviting patients, (diverse ethnicities, region covered, socio-economic status, multi layered educational levels, background challenges, issue focus, relative content all hopefully reflective of ones organization patient populations).

How: Patient partners might not know or understand all the nuances involved with attending a conference. What will the conference registration, travel, accommodations, meals and incidentals coverage look like? Patient conference attendance pre-paid up front, or is the patient to be reimbursed afterwards? Defined scholarships, stipends and honorariums are all to be taken into account when inviting patients, persons or public to your medical or research conferences. Patients might face challenges with the conference reimbursement option, and might not have a credit card, let alone the available credit line that is often needed to check into a hotel.  Information and details should be worked out with patients before attending any conference.

How II: There are entities that support patient partners ability to attend medical and or health research conferences. You might like to learn more about PCORI Engagement Conference project grants and also, please read the Patients Included charter. Medical societies, institutions, organizations, patient advocacy groups and academies on occasion financially cover patients to attend conferences, this is where an e-(engaged) patient might inquire to an affiliate partner regarding their opportunities.  Society for Participatory Medicine @S4PM is an innovative collaborative whose tag line is Transforming the Culture of Patient Care. S4PM also offers Patient travel scholarships, and I would like to boldly add, donating to this fund allows patients to be able to attend conferences. I am honored to have received @S4PM travel scholarship this year, this funding allowed me to have the ability to attend one of the June conferences listed above, where my attendance was not fully funded by the conference host or support organizations.

Who: Patient partners participating in medical conferences? yes.  I started out attending medical and health research conferences as an engaged patient answering pre and post surveys, perhaps assigned to a few specific sessions to provide feedback,  basically I had to find my sea legs² through my own volition. It is highly recommended that any organization who invites patient partners to their conference provide a pre orientation opportunity either through a call, webinar, orientation guide or all three. Medical and health research conferences can be overwhelming to anyone, there are many Doctors> PhDs /MDs from various disciplines, a myriad of acronyms interwoven into any session, a plethora of medical and or research terms, so much to learn for everyone in attendance and especially patient partners!

I have taken the liberty as a patient partner, and have broken down into levels, patient partner involvement possibilities when they/we are attending medical and or health research conferences. This conference brochure I initiated, though am hoping others might like to collaborate with to create a more professional offering. Feel free to send any feedback as some fellow patient partners would like to create and publish a more effective resource than this starter brochure. Volunteer power and free for all interested.

To summarize more succinctly, you never know the power of ‘One’.  You might be amazed to find out that just one patient story shared by the patient can prove be a positive catalyst, a game changer at any given conference. Please do not underestimate the value that patient partners can bring to your event. The relevancy of patient partners comments can move the trajectory of your clinical care and or research towards a more focused patient centered model³.

I hope to have the opportunity to might meet you at a conference soon!

To study the phenomenon of disease without books is to sail an uncharted sea, while to study books without patients is not to go to sea at all.

–Sir William Osler, ‘‘Books and Men’’ in Boston Medical and Surgical Journal, 1901.



¹Learning to “Swim” with the Experts: Experiences of Two Patient Co-Investigators for a Project Funded by the Patient-Centered Outcomes Research Institute Project: Learning to Integrate Neighborhoods with Clinical Care LINCC April 2016The Permanente journal J 2016 Spring; 20(2):Apr 8, 2016 DOI: 10.7812/TPP/15-162

²Sailing Osler’s Uncharted Sea with Innovation and Collaboration at the Helm        Ochsner Journal 16:1–2, 2016 Academic Division of Ochsner Clinic Foundation



Information and Further Reading: 

Patient and Family Advisory Councils (PFACs): Identifying Challenges and Solutions to Support Engagement in Research

Patient Participation at Health Care Conferences: Engaged Patients Increase Information Flow, Expand Propagation, and Deepen Engagement in the Conversation of Tweets Compared to Physicians or Researchers

The PCORI Engagement Rubric: Promising Practices for Partnering in Research

The prevalence of patient engagement in published trials: a systematic review


Some June Conferences 

………………………………………………………………………………………………  I added this further reading after seeing the tweet @mightycasey 2 days after I wrote this post thank you