Posts

Cyber Hygiene: What Is It and Why Does It Matter? #patientchat Highlights

Last week, we hosted an #patientchat on “Cyber Hygiene: What Is It and Why Does It Matter?” with Casey Quinlan (@MightyCasey). The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Keep Your Online Info Safe


Physical Distancing 


Everything is Connected


Full Chat

Removing Barriers to a Successful Patient-Provider Relationship #patientchat Highlights

Last week, we hosted an #patientchat on “Removing Barriers to a Successful Patient-Provider Relationship”. The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Holistic Medicine


“Equified Partnership”


Keys to a Good Patient-Provider Relationship


Full Chat

Driving Change: How Rare Disease Patients Can Get Involved #patientchat Highlights

Last week, we hosted an #patientchat on “Driving Change: How Rare Disease Patients Can Get Involved” with RDMD (@rdmd). The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Equality vs. Equity


Continued Discussion


Culture Change


Full Chat

Disparities in Care: Equality vs. Equity #patientchat Highlights

Last week, we hosted an #patientchat on “Disparities in Care: Equality vs. Equity” with Diverse Health Hub (@DHealthHub). The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Equality vs. Equity


Continued Discussion


Culture Change


Full Chat

What Does Patient-Centric Care Look Like For You? #patientchat Highlights

Last week, we hosted an #patientchat on “What Does Patient-Centric Care Look Like For You?” and the #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Focus on Patient Activism


Patient-Centric = Viewing Patients as a Whole Person


All Patients Have Different Needs


Full Chat

10 Body Signals Warning Health Problems

Most often, we don’t worry about our health until we start to experience severe symptoms. Things like headaches, stomach aches, and fatigue have become too common that many people think they’re just normal. Well, most of the time they are. And even the healthiest individuals can suffer from occasional discomfort and pain.

However, we should always be aware of what our body is trying to tell us.

Below are 10 ways our body signals that we should be more concerned with our health:

Unexplained Weight Loss

Drastic weight loss is something to be worried about, especially if you haven’t changed anything in your diet. Most often, it indicates an underlying condition.

Health problems associated with unintentional weight loss are overactive thyroid, rheumatoid arthritis, diabetes, inflammatory bowel disease, chronic obstructive pulmonary disease (COPD), depression, endocarditis, tuberculosis, and cancer. As you can see, all these are chronic illnesses that require immediate and proper treatment. If you’ve lost more than 10 pounds without exercise or diet changes, it’s time to check in with your doctor.

Stomach Pain

You can have stomach pain for many reasons. Indigestion, allergies, or some bacterial infection are among the most common causes of abdominal pain. These symptoms can be addressed by taking either prescription or over-the-counter medications. And more importantly, by practicing proper hygiene like washing hands regularly or sanitizing surfaces with disinfecting wipes before use.

However, in some cases, stomach pain signals something more serious, such as a heart attack. Other symptoms to watch out for are nausea and heartburn. Meanwhile, “crampy” abdominal pain that is accompanied by bloating and diarrhea may signal irritable bowel syndrome (IBS).

Chest Discomfort

Chest pain is a major red flag that requires immediate medical attention. It’s a common symptom of a heart attack but it could also be caused by pancreatitis, pneumonia, panic attack, and many more health problems.

If you or someone you know suffers from chest pain along with nausea, shortness of breath, pain or numbness, lightheadedness or dizziness, sudden weakness, flushing or a cold sweat, call 911 immediately.

Skin Problems

You can have a quick assessment of your overall health just by looking at your skin.

Being the largest organ in the human body, the skin can tell a lot of things about our health. For instance, a skin rash that is accompanied by fever, joint pain, or muscle pain could indicate an internal problem or an infection. Yellowing of the skin could suggest liver failure while darkening of the skin, particularly on skin folds, could be a sign of hormonal disease.

Other skin problems that signal a need to check in with your doctor are:

Wrinkles

It’s common for older adults to have these. But deep forehead wrinkles could point to atherosclerosis which is the hardening of arteries – a risk factor for heart disease.

Breakouts

Acne is a common skin problem that can happen even in healthy individuals. But how do you know that it’s more than acne? If you haven’t had acne for a long time and you suddenly experience breakouts, it’s best to consult your doctor. Sometimes, it could indicate Polycystic Ovarian Syndrome (PCOS) or hormonal disorders.

Dryness

Dry and itchy skin could be a sign of a hormonal problem, such as an overactive thyroid. Meanwhile, people with autoimmune disease may suffer from swelling and hardening of the skin.

Weakness in the Arms and Legs

This symptom is due to loss of muscle strength, which can be caused by different health problems. Weakness, which also comes in the form of weariness, tiredness, lack of energy, or fatigue could be a sign of underlying illnesses like congenital myopathies, electrolyte imbalances, malnutrition, malignant tumors, nerve impingement.

Fluctuation in Body Temperature

The normal body temperature is 98.6°F (37°C) ± 1°. It’s common to go past this reading when you have a fever. Also, minor fluctuations are normal and can be attributed to environmental factors. However, excessive fluctuations in body temperature could signal more serious conditions, such as hypothyroidism, adrenal fatigue, septicemia (a type of bacterial infection), and altered insulin activity.

Sleep Issues

Common conditions associated with sleep problems are heart failure, musculoskeletal disorders, kidney disease, and thyroid disease. Insomnia is also a common symptom of mental health disorders like general anxiety, phobias and panic attacks, bipolar disorder, depression, and schizophrenia.

Moreover, certain brain and nerve disorders like dementia and Parkinson’s disease can all cause sleeplessness.

Bathroom Problems

People with type 2 diabetes have bodies that are less efficient at breaking down food into sugar. As a defense mechanism, the body will try to eliminate the sugar by flushing it out into the urine. If you experience more frequent trips to the bathroom (and feel thirsty more often), consider undergoing a blood test to know your average blood glucose level. The sooner diabetes is diagnosed, the easier it is to reverse through proper lifestyle changes.

Chapped Lips

If you can’t live without applying lip balm, it’s your body’s way of telling you that something is wrong. Dry, chapped lips are a common cause of vitamin deficiency. Consult your doctor for some lab tests and switch to a more balanced diet to make sure you’re getting the nutrients your body needs.

Cloudy Mind

Do you feel ‘lost’ lately? Are you unable to solve simple problems or formulate a potent thought? Cognitive and physical health are intertwined. Just as cognitive problems can result in some physical symptoms, physical illness can also affect our cognitive abilities. Obesity, for example, can significantly impact one’s ability to think and reason.

Chronic health problems usually start with minor symptoms. It’s best to consult your physician for any of your health concerns.

How to Read and Understand Scientific Research #patientchat Highlights

Last week, we hosted an Empowered #patientchat on how to read and understand scientific research. The #patientchat community came together for an engaging discussion and shared their best advice and tips.

Top Tweets and Advice


Understanding Scientific Research Is Critical


Science should be accessible to all


“The whole of science is nothing more than a refinement of everyday thinking”


Full Chat

Managing the Emotions of a Chronic Illness #patientchat Highlights

Last week, we hosted an Empowered #patientchat on managing the emotions of a chronic illness. The #patientchat community came together for an engaging discussion and shared their best advice and tips.

Top Tweets and Advice


Step One: Acknowledgement


Emotions Aren’t “Negative” or “Positive”


“We all deserve the freedom to express feelings all the time”


Full Chat

Four-Legged Physicians: How Dogs Can Aid Patient Therapy

Dogs and humans have shared a special bond for over 12,000 years.  Clinical research has shown that dogs increase quality of life, finding that those living alone with a dog have a 33% decreased risk of death.  A study published by the Complementary Health Practice Review also found that pet owners are likely to have lower blood pressure, better cognitive function, and decreased anxiety than their non-pet owning counterparts. For those fighting along term or chronic illness, spending time with a dog can have broad health benefits for both the body and the mind.

Mental Health

A long term hospital stay is difficult for patients, particularly those in critical care units.  Even physicians with exceptional bedside manner can only do so much to mitigate the clinical nature of a hospital room. A study published in Critical Care shows that animal therapy can help ICU patients overcome the mental health issues associated with an extended hospital stay.  Bringing in a dog to engage with patients breaks up the monotony of the hospital, and improves mood. 74% of pet owners report improvements in mental health, showing that dogs lessen feelings of loneliness and isolation.

Dementia And Alzheimer’s

Patients in nursing homes go through many of the same problems as those battling in an ICU.  Nursing homes pose a particularly great challenge for those with dementia and Alzheimers, as unfamiliar settings and faces can cause distress.  A promising study published in the American Journal of Alzheimer’s Disease and Other Dementias shows that dementia patients enrolled in animal-assisted therapy had decreased levels of agitation and greater social interaction than a control group.  Notably, many of the patients involved in the study had owned dogs in the past.  A key part of treating dementia-type disorders is involving patients in activities that they have enjoyed over the course of their life.  For animal lovers in nursing homes, playing with a dog for even a few hours a week can have a massive impact on their quality of life.

Exercise And Physical Fitness

Most dogs are seemingly boundless, furry balls of energy – particularly high energy, social breeds such as Black German Shepherds. Walking and playing with a high energy dog is necessary for their happiness, and comes with the obvious benefit of weight loss and a decreased chance of diabetes for people as well.  The benefits of playing with a dog can be much broader than weight loss. Exercise is a vital part of physical rehabilitation, and has shown to cause remission of major depressive disorder on par with antidepressants in clinical trials.  Coupled with the effort required to keep them healthy, a dog can give a person recovering from an illness a greater sense of purpose, which helps patients mentally as well as physically.

Registering a therapy dog requires a bit of work, but is a worthwhile vocation for both dog and owner.  While medications and in-patient care are necessary for many illnesses, a visit from a dog can help make the arduous process of getting healthy a little less taxing and far more rewarding.

Patient Access: Let’s Talk Healthcare Conferences #patientchat Highlights

Last week, we hosted an Empowered #patientchat on the power of patient storytelling with special guest HealthSparq (@HealthSparq) to explore the accessibility of patients to attend healthcare conferences. Lisa Deck (@lbdeck) and Emily McIntosh (@mcintose) the winners of two patient scholarship also joined us. Their scholarship goes towards attending the The Patient Experience Symposium.

The #patientchat community came together and shared their best advice and tips.

Top Tweets and Advice


We Still Have A Long Way To Go


Importance of Inclusion


Less Swag, More Patients


Full Chat

 

What To Avoid When Speaking With Someone Who Has Dementia

In recent years, those who live with dementia are leading fuller, more active lives than they may have done in previous decades. Treatment is more readily available, and though there is no known cure as yet, the general public are better informed in how to approach those who have it.

But if you’ve not met someone who has dementia before, there are a few easy mistakes to make which can be embarrassing and distressing for everyone involved. Below are a few things to avoid when conversing with someone who has dementia.

Recall

One of the most difficult symptoms of dementia to navigate is the loss of full recall (https://my.clevelandclinic.org/health/articles/11826-memory-loss-signs-of-dementia–more-). Many people with dementia can become very distressed and embarrassed when asked a direct question about past events that they have difficulty remembering. Sometimes the inability to recall can be very slight or can be dramatic.

“If a person with dementia talks about a subject that shows they are having difficulty recalling, you should ask yourself whether it is truly necessary,” writes Stephen James, an author at Academized and PaperFellows. “If you do need to help them remember something, avoid asking them directly, and talk, instead, about what you remember about an event or story.”

Confusing Directions

Dementia can affect verbal cognition. Remember that if a person with dementia is having difficulty understanding an instruction, continuing to repeat that instruction is likely to confuse them further. If you need a person with dementia to perform a series of actions, such as putting on a coat and shoes and getting into a car, listing them off in one go is going to overwhelm them.

Instead, give clear direction for each task you want them to do. It is important to issue them as directions rather than questions as they may have difficulty understanding the context for each action.

Complex Language

In fact, it is a good idea to modify your language over all. Even those who have had a large vocabulary may have difficulty fully comprehending long winding sentences. Using complex words and difficult phrases is likely to cause confusion which, in turn, can lead to embarrassment and irritation.

Instead, use simple sentences with uncomplicated words. Having said that, remember that dementia doesn’t affect a person’s IQ, so it is also important not to become condescending.

Emotional Subjects

Living with dementia can be distressing enough without someone constantly reminding you of all you may not recall. If you are speaking with someone who lives with dementia it is important to avoid conversations which may make them emotional. This can include correcting aspects of their lives that they may not recall, or distressing events such as a loved one’s death which they may not remember.

It is best to avoid conversing on explosives subjects such as politics or religion,” says Jane Renbourne, a regular contributor to Custom Writing Service and BigAssignments. “Though they may be able to recall aspects of this, those who live with dementia have difficulty dealing with conflict. Even what seems like a slight disagreement may spiral out of control. “

Impatience

Most importantly of all, it is important to remain as patient as can be when interacting with a person living with dementia. Showing haste to complete their sentences, telling them things you think they should remember and disrespecting their need to communicate for themselves is as upsetting as it is with anyone else. Remember that however difficult adapting to dementia is for the observer, it can be a constant source of frustration for the person who has it.

However, if you show some understanding and patience, there is no reason that both you and your friend with dementia cannot spend some wonderful and meaningful times together.

 

Words Matter: Why Cancer Isn’t a Game of Winners or Losers

Are you “battling” cancer? Do you know someone who has “lost their fight” with the disease and died?

It seems whenever we hear a story about someone with cancer, war metaphors are never far behind.  Cancer battles must invariably be bravely fought, won, or lost.  Using this metaphor implies that if a patient fights hard enough and/or long enough, he or she will be able to “win the war.” The trouble with using this particular kind of metaphor to describe cancer is it puts the burden of healing on patients by turning them into winners and losers.  As breast cancer blogger, Nancy Stordahl, writes in What Does Beating Cancer Mean Anyway? ”Struggling to live up to some gold standard of what beating cancer means, adds to the already exhausting burden. We need to stop patronizing and judging cancer patients based on misguided battle talk analogies. Cancer isn’t an opponent in some war game you can stomp out by mindset or determination.”

Besides, the battle metaphor takes no account of the sheer randomness of the disease. Using a statistical model that measures the proportion of cancer risk, across many tissue types, scientists from the Johns Hopkins Kimmel Cancer Center published a study in 2015 which concluded that two-thirds of the variation in adult cancer risk across tissues can be explained primarily by “bad luck.” In other words, a major contributing factor to cancer is in fact beyond anyone’s control. For the most part, we don’t know why one person is alive 10 years after the diagnosis of advanced cancer, whereas another dies within months.

By this reasoning, no amount of fighting or battling cancer can affect its outcome.  Commenting on the study, the researchers said, “Many people have found relief in this research. Cancer has a long history of stigmatization. Patients and family members frequently blame themselves, believing there was something they could have done to prevent their or their family member’s cancer. We have heard from many of these families and are pleased that our analysis could bring comfort and even lift the burden of guilt in those who have suffered the physical and emotional consequences of cancer.”

Cancer is a disease; not a military campaign

Cancer is a disease; not a military campaign. In the words of patient and caregiver Jana Buhlman, “it’s a disease that people manage.”  Cancer is a complex disease. Yet there still exists a prevailing attitude to cancer which treats survival as though it were somehow an act of will.  You’ve got to be strong, remain positive and be courageous to overcome the disease.  Clodagh Loughrey, who was diagnosed with breast cancer nine years ago, explains, “I was absolutely petrified at the time, the opposite of strong or courageous, and to be also made to feel guilty for being scared by well-meaning exhortations to be ‘be positive’….people mean well and I didn’t want to sound ungrateful for the support as it is far worse (and easier for them) to avoid people with cancer, and some people did.”

What other diseases or condition do we say this about? “Do we fight a heart attack or a stroke? Are we told in any other illness to “keep fighting”? asks Jo Taylor, Founder of After Breast Cancer Diagnosis.   The fact is cancer doesn’t care how courageous or positive you are. Patients are in remission because treatment eliminated every cancer cell from their bodies, not because the patient fought courageously or was endlessly positive.  As a patient who is currently NED (i.e. no evidence of disease) I didn’t fight any harder than anyone else with this disease. I haven’t “beaten” cancer. I don’t know for sure that cancer will not come back again.

Cancer isn’t a game of winners and losers

I’ve lost count of the number of times I’ve read about patients who are in remission from cancer, having “won their fight” against the disease. Journalists in particular seem incapable of writing about a person who has died from cancer without resorting to the “lost fight” cliché.  Julia Barnickle, who is living with metastatic breast cancer, points out that while she doesn’t like the term personally, “I have no problem with cancer patients using fighting talk. However, I do object to the media using it, especially in the situation where someone is said to have “lost their battle with cancer.” It’s simply a hackneyed way of grabbing attention.”

Does this imply that patients in remission have somehow done more than those who aren’t in remission?  Or that cancer progression or death from cancer is somehow an indication of failure – of not having had the ability to fight and defeat the enemy?  “It seems,” in the words of breast cancer blogger Maureen Kenny, “if you’ve got cancer you’re almost always seen as battling or fighting it, more often than not bravely. We never hear of anyone dying of the disease after a lacklustre, take or it or leave it, weak-willed tussle.”

Cancer shouldn’t be reduced in this way to a game of winners and losers.  Commenting at the time of the death of film critic Roger Ebert, Michael Wosnick, wrote: “The use of the word, “lose” is like a zero-sum game to me: if someone or something loses then that means that someone or something else wins. You can’t have a loser if you don’t have a winner. We should not so easily give cancer that kind of power over us.”

If someone has lifelong hypertension and dies from a heart attack, do we say in the obituary that they lost their battle with high blood pressure? Then why do so many deaths from cancer get reported this way? While it’s not quite “blaming the victim”, it does have an implicit element of somehow placing the ultimate responsibility for having died in the hands of the deceased.

When words blame

Oncologist, Dr Don Dizon, tells a story about taking care of a young patient with ovarian cancer during his first year as an attending physician at Memorial Sloan Kettering Cancer Center. The patient had just relapsed from first-line treatment and in his discussion with her about the next steps, Dr. Dizon explains that, “despite the failure of first-line treatment, there are many more options for you.”

The doctor was stunned by the patient’s tearful reaction to his words: “You make it sound like this was my fault, like I did something wrong!” she said. “I’m sorry I failed chemotherapy, if that’s what you think, and I’m sorry I disappointed you.”

It’s a lesson Dr. Dizon has never forgotten, as he describes in his own words: “It was never my intention to place ‘blame’ on something so devastating as a cancer recurrence, and I certainly did not mean to imply that she had failed. These many years later, I still consider this encounter a watershed moment in my career as an oncologist.”

The “battle with cancer” may be “only a metaphor” but it stands for a quite destructive attitude that, to the extent it influences doctors as well, distorts the treatment of cancer too.  In a JAMA Oncology article, the authors discuss how “the continuous urge to win the battle extends to oncologists, who actively treat patients for too long. The fact is that 8% of patients receive chemotherapy within 2 weeks of dying of cancer, and 62% within 2 months. Late chemotherapy is associated with decreased use of hospice, greater use of emergency interventions (including resuscitation), and increased risk of dying in an intensive care unit vs at home. This all clearly reflects our society’s need to battle until the end.”

Embracing a fighting spirit can work for some patients

This isn’t to deny that some cancer patients embrace a fighting spirit as a way that helps them feel more in control.  Cancer survivor, nurse and educator, Beth Thompson describes how “identifying as a shorn ‘warrior’ psyched me up for and pushed me through treatment.”  Sara Turle, a 9-year survivor of cancer, also found resonance in the metaphor. “For me I was never battling cancer: it’s a disease, but I was definitely battling how I managed diagnosis and particularly getting through the side effects of treatments,” she explains. “It helped me to look at each stage and at times each day and even hour, at worst points, with a view of getting through, surviving and celebrating with just a simple acknowledgement. It truly helped me feeling that achievement and it helped with knowing that I was going to have to face it again.”

Professor Elena Semino and her colleagues have been studying the use of metaphors in the way we talk about cancer since 2012. As part of their research they have analysed 1.5 million words taken from interviews and online forum discussions involving cancer patients, family carers and health professionals. The team found that the type of metaphors people chose to use when describing their cancer reflected and affected how they viewed and experienced their illness. “For some patients, some of the time, the idea of being engaged in a fight is motivating,” explained Sermino. “Some people say with pride that “I’m such a fighter”, and they find a sense of meaning and purpose and identity in that. The study showed that we are all different, and different metaphors work for different people, and at different times.”

I agree. I’m not criticizing individuals who draw strength from calling themselves fighters.  Everyone is entitled to use whatever language they want to describe their own experiences. As Sara says, “My belief is that the right language is what is right for the individual person and I would hate to think that people who do find this language helps, feel that they can’t openly use for fear of what others may think. Whatever language gets you through is the right language for me. I am very mindful of when speaking to people now to be sensitive to the language they are happy with and these discussions of differing views have helped me with this.”  Beth agrees and asks, “Can we educate while still leaving room for what works for the individual experience of cancer?”

Wrapping Up

If you believe, as many patients do, that the words we use to describe cancer matter, how then should we begin to conceptualize it? Stephanie Sliekers asks a similar question in this HuffPost article, “If cancer really is the ‘enemy’, what’s the best way to beat it?” Her answer? “By studying and understanding it as it is, a disease borne out of human blood, tissues and genes, a disease that lives within us whether it is treatable or fatal.”

Perhaps, rather than speaking of cancer in militaristic terms, it’s better to communicate that we are “living with cancer” for as long and as well as we can. And when a person dies, let’s not say he/she has lost anything, but rather that person has died after living with cancer for a period of time.

Words matter a great deal in life, death, and everything that comes in-between. To quote Dr Dizon “Words are powerful and despite our best intentions, can hurt—this is true in life, and it is true in oncology.”

The Power of Patient Storytelling #patientchat Highlights

Last week, we hosted an Empowered #patientchat on the power of patient storytelling with special guest Kerri Sparling (@patientrev). Kerri was diagnosed with type 1 diabetes in 1986, sits on the Patient Revolution team,  and is working towards careful and kind care. The #patientchat community came together and shared their insights and best advice.

Top Tweets and Advice

Raise Awareness

 

 

 

 

 

 

 

 

 

Enlist Support

 

 

 

 

 

 

 

Share Your Story With Your Doctor

 

 

 

 

 

 

 

 

 

 

 


Full Chat

Patient Participation in Research: Towards Meaningful Engagement

“If patient engagement were a drug, it would be the blockbuster drug of the century and malpractice not to use it.” Leonard Kish

Have you detected a recent upsurge in activities concerning patient engagement in health research? If you are involved in patient advocacy, you may be increasingly aware of discussions around the importance of patient-oriented research. However, despite strong acknowledgement of the benefits of engaging patients in research, gaps still exist between the theory and the practice of patient engagement.  This article explores the ways in which patient participation in health research can move beyond rhetoric towards activity which results in research better aligned with meaningful patient outcomes.

What is patient participation in research?

You may notice that there is a wide range of terms used to describe patient oriented research.  Depending on which country you live in, you’ll hear a variety of terms from “patient/public/service/user/engagement,” to “participatory research,” “patient and public involvement,” and “co‐researcher/ co‐investigator.”

While there may not be a consensus for the terms used to describe patient oriented research, there is one fundamental concept that sets it apart from traditional research. In the past, patient participation was limited to involvement as research subjects. Research was undertaken by researchers to and for patients.  When patients are actively engaged, research is undertaken jointly with them.   This is an important step in ensuring that the real-life experiences of patients are considered in determining research priorities that are most relevant to patients themselves.

Why should you engage in health research?

There are many reasons why you may want to get involved in health research. Perhaps you wish to understand the research behind your disease and hope that involvement will give you direct access to knowledge of new treatments. You may also want to find a way to put your personal knowledge of the healthcare system and your experience of your condition to good use. In this way you can play a part in improving care for other patients. Those patients who take an active part in aligning research with real-world needs of patients and caregivers report feelings of increased self-confidence. By developing a stronger advocacy voice they feel more empowered, respected, and valued.

By engaging in research you can broaden the agenda beyond that set by health professionals and researchers. As someone who directly experiences illness and medical care, you can bring the perspective of what it is like to live with a disease. You’re uniquely positioned to contribute to research by sharing important ideas about what research would be most beneficial to you and other patients like you.  

How can you get engaged in research?

Patients can be engaged across a spectrum of research from planning and priority setting to disseminating findings. The deeper the degree of participation, the greater the influence you will have in decision making.    Becoming involved at the outset of the research project means you can identify relevant research questions and meaningful study endpoints.

Historically, researchers have framed questions which are not particularly relevant to patients. As an example, the research priorities of patients with osteoarthritis of the knee and the clinicians looking after them, were shown in a study to favor more rigorous evaluation of physiotherapy and surgery, and assessment of educational and coping strategies. Only 9% of patients wanted more research on drugs, yet over 80% of randomized controlled trials in patients with osteoarthritis of the knee were drug evaluations.


Research Stage 

Level of Involvement

Identifying/Prioritizing Determining the research topic, alignment of priorities, and identification of research questions.
Design Ensuring that the research methods are sensitive and appropriate for study participants.
Management Recruiting study participants; conducting interviews; being an active member of a steering group.
Data Analysis Highlighting findings that are most relevant to patients; summarizing the research for lay audiences.
Dissemination Improving access to patients via peer and social networks and accessing difficult-to-reach patient groups.

How do you know if participating in research is right for you?

It’s important to understand the reasons why you are being asked to take part in a research project. You and the research team should have a shared and clear understanding of what you are being invited to do.  Sometimes researchers look for patient participation to fulfill a funding requirement, without being clear about the role that patients will actually take.  Without a clear understanding of what meaningful engagement looks like, researchers may end up including patients solely to tick a funding box. Taking part in this kind of tokenistic research can be extremely unsatisfying and leave you feeling undervalued and frustrated.

Asking the following questions of the research team can be useful to help you decide whether or not a particular research project is right for you.

  • What level of involvement do you want from patients?
  • What change can happen as a result of this engagement activity?
  • What is my role? (Ask for a written “job” description.)
  • Are there any particular skills you are looking for? Do I need to understand research methodology, acronyms, and technical language? Will training be provided if I’m not familiar with research processes?
  • What is the time commitment you will expect of me? (You should take into consideration your other work or family commitments. For instance will you need to take time off work to attend meetings?)
  • Where will meetings be held? Are there accessibility issues you need to be aware of?
  • What preparatory work will be required to carry out in advance of meetings (e.g. pre-reading?)
  • How will I know if my input is incorporated in the research findings?
  • If my feedback isn’t used, will you share the reasons why not?
  • Are you paying patients? (Reimbursements for out‐of‐pocket expenses should be viewed as an absolute minimum.)

If you’re not satisfied with the answers you receive to these questions, then you should consider whether the project is something worth giving up your time for. Participating in research is time-consuming and sometimes it can be emotionally and physically draining. Consider too at what point you are in your own health journey. Will participation in research place an added burden on your treatment or recovery?  In making the decision to become involved in research, you should always balance your own health needs with the desire to be supportive of research and the research process. Heed the advice of pediatric neurodisability advocate, Jennifer Johannesen “if there is insufficient effort to justify and substantiate what is being asked of you, or it’s unclear as to why you’re involved, you can decline.”

Meaningful engagement is about shifting the traditional paradigm of patients as passive participants, to one in which we are fully involved as active contributors who have a sense of ownership in outcomes. You need to be able to trust that you are being genuinely heard and your concerns are being acted upon. Look for projects that champion diversity, reciprocal trust, and strong sustainable relationships. Ask for no less than this – research that respects your unique perspective and expertise and values your contribution as an equal partner in the research process.

Barby Ingle – What Advice Do You Have For Someone Who Is Newly Diagnosed?

As the president of the International Pain Foundation, a best-selling author, and chronic pain advocate, Barby Ingle shares her advice for the newly diagnosed. For all our A Conversation With… videos please click here.

Barby Ingle – What Advice Do You Have For Someone Who Is Newly Diagnosed? from Patient Empowerment Network on Vimeo.

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