Coping Through Adapting: Not Quite the Same as Doing Well

A few years ago my rheumatologist used a computerized patient reporting system on a trial basis. Patients were asked to fill in a detailed questionnaire at home the day before their appointment. I'm sure it was useful for the doctor to see a graph of people's progress over a period of years. I was very enthusiastic to see my chart take shape as time went on and to be able to track the changes in my reported health. The link to the chart is similar to the one I used but not the same.

It took a while for me to notice how little change there was in some areas. With rheumatoid arthritis (RA) I could see changes in pain, sore and swollen joints, and activity levels of  RA. What didn't change was the global assessment and I came to realize that it would take an amazingly good or a shatteringly bad result to change that marker at all.

Known as a homunculus. RA version. Hands and feet exaggerated because of numbers of joints affected

The other area that did not seem sensitive was the health related quality of life (QOL or HRQOL). Over my whole time in this reporting system there was no significant change. Minor variations may have been connected with how literally I read the questions.

There were 25 statements to determine QOL which were rated on this scale:
Sample question. I can do chores such as vacuuming and yardwork...
Without any difficulty
With some difficulty
With much difficulty
Unable to do
Not Applicable

There are many things that you can do more easily by adapting your activities, products or the methods that you use to do things.

Some examples of this:
Opening car doors - Just shop for a car that has doors you can open.
Turning faucets off and on - Buy a lever-style tap
Cut your meat - Use a sharp or right angled knife
Lift a full glass or cup to your mouth - get lightweight or plastic glasses and cups
Open a new milk carton - Stop buying milk in cartons
Dress yourself including laces and buttons - Fewer buttons, ditch the Spanx, stop wearing tight pants where you have to force the zipper up and the button fights you, try velcro-closing shoes.

I'm sure you see where this is going. By making a myriad of changes in your life and habits, it looks as though you are maintaining you QOL. In a sense you are maintaining it because change is not the same as loss, but these changes make you feel that control of your life is going to the disease. None of the lifestyle alterations feel positive when you have no choice but to adapt.

Using a working splint helps me to cope with typing for a long time

So on the chart your condition looks stable, but in truth you are changing your habits in so many ways and your life is so affected by RA that you barely recognize it anymore. I say the measurement process is flawed.

Another item missing from this system was a measure of fatigue, which is very common in autoimmune diseases. It makes you wonder about the extent of patient input into these patient reported outcomes. Who is better than a patient to describe the outcomes and issues they deal with daily?

One article I found very interesting was titled Patient participation in psoriasis and psoriatic arthritis outcome research
by Maarten de Wit et al. Prior to the 2013 GRAPPA (Group for Research and Assessment of Psoriasis and Psoriatic Arthritis) annual meeting a literature review was done to confirm levels of patient involvement in previous outcome level development. They found 63 articles related to 26 outcome measures and only one described any patient involvement in determining outcome measures. This 2013 meeting was the first time there was an official patient presence at the meeting and it was described as "an important first step into incorporating their voice into GRAPPA's research agenda".

Amazing what literature reviews can tell you. I'll be looking for more, since it is hard to believe that psoriatic arthritis is the only disease area where the patient voice is missing in something as basic as outcome measures.

There's another post on this topic Dropping the Ball on Patient Outcomes?

Patient Safety in Hospitals. Could Patients Help?

When I returned from the Medicine X Conference at Stanford I felt empowered as a patient. Meeting so many people with healthcare ideals that were similar to mine made me feel as though anything was possible. Once I got back I saw an invitation for patients to attend this year's Patient Experience Conference. That was one in the "win" column - last year in social media there were complaints about the same conference for having no patients in the room. This year the policy changed, in part due to sponsors I'm told.

Yet in hospitals as a patient I often don't feel like the advocate I am. I don't feel empowered - I do what I'm told to do. I would like to see a forum or some route for input into the Safety and Infection Control practices, but though I read the newsletter, newspapers, emails and even the signs posted looking for volunteers for mental health, depression, bone health, migraines etc, I see no way to join any discussion of safety and infection control in a particular institution.


As an example of an issue, the idea of walking barefoot on a hospital floor would not seem healthy to many people and yet I am asked to do that regularly. It's an ingrained habit not to rock the boat. Friends in my online group relate similar experiences, like Julie's at her hospital, when the CT tech wanted her to lie down on a sheet that did not look clean. She felt like taking a dirty sheet in to them with a footprint on it and then a clean sheet to show. the difference.

I would argue that no one is perfect, and that try as they do, the infection control committees could use input from patients who sit there sometimes for hours on end observing what is going on around them and worrying.

There are many more examples now of hospitals listening to patients and those are steps in the right direction but I would like to see them all on similar paths.

Web, Apps and Wearables: Tools For Joint Health

The eROAR webinar on Saturday is an annual event presented by the Patient Advisory Board of The Arthritis Research Centre. The broadcast went by so fast it was hard to absorb all of the facts, so I hope that looking at it again is useful.

Dr. Linda Li was one of the speakers. She spoke about apps and wearables and their possible use in improving joint health. Sam Bradd did a wonderful job of using his skills to turn the speaker's presentations into art and below is what Sam drew based on Dr. Li's talk.

Picture by Sam Bradd, graphic recorder.

Wearables and apps used in healthcare are a very hot topic, and I saw them in evidence at MedX in Stanford among both attendees and exhibitors. I thought that the Lumo looked interesting. It's a small device that vibrates when your posture needs adjustment, Mostly though, when I measure any aspect of my health, it's an issue of whether or not my favourite jeans are too tight, just as Susannah Fox has been quoted as saying in the past.

Dr Li takes a more scientific approach, starting by telling us that the future is here. In 2014 'wearables' are expected to generate $3 billion in sales as they move from technology enthusiasts to everyday users. With this ability to collect minute to minute information and pair it with a mobile device there is great potential to help people be active.

Not many people use them yet. Dr Li suggests use of exercise to help in osteoarthritis (OA) to improve pain and function, weight loss to decrease symptoms, and acetaminophen as the first line pain medication.

Studies like the Canadian Community Health Survey have shown that large percentages of people with OA do not meet guidelines for physical activity, which call for only 150 minutes per week.

Why is this the case? Lack of motivation is number one. When you are in pain it takes more effort to remain active. Other reasons for inactivity which people give are doubts that it will work and lack of professional advice.

Dr Linda Li and partners in the Arthritis Research Centre and other funders, are in the process of recruiting for six different studies, some in osteoarthritis and some in rheumatoid arthritis, lupus and in indigenous communities. You'll be seeing more results coming from her as this data is analyzed.

Activity trackers are looking more attractive to me as time passes. It seems there is more attention being paid to them as a way for people with chronic health problems to improve activity levels. The call for 10,000 steps a day is being modified as usage moves from the very healthy to the not so healthy.

Here is the text from one of Dr. Li's slides that describes a physical activity counselling model. This is what is happening when people join one of her current studies.

1.Physiotherapist provides information on physical activity

•A brief education session

•Goal-setting

2.Fitbit Flex – an activity tracker

3.Physiotherapist reviews physical activity with participants

•10-minute weekly phone counseling

•Progressively modify the participant’s activity

•Patients may email if they have questions

A tweet about Dr Li from #eROAR Nov. 22

Dr Linda Li @LLi_1 2014 recipient Outstanding Inclusion Patients in Research award @Arthritis_ARC patient advisory board 2time win!



Exercise is necessary. Raise a little sweat.

What do you want researchers to find out for you?

I've heard a lot of talk this past year about patients being more involved in research and in decision making. People in high places are talking about including the patient voice, from Ontario's Health Minister Eric Hoskins on Thursday at Health Quality Transformation 2014, to the Canadian Foundation for Healthcare Improvement (CFHI).

Minister Eric Hoskins said the first priority is to create and grow a patient centered health system. CFHI (Canadian Foundation for Health Improvement) says they are "Putting Patients at the Centre of Care" and they are behind the Strategy for Patient-Oriented Research (SPOR) which has big research projects coming up. These indicators sound as though the patient rallying cry of "Nothing about me without me" has been heard.

This does not guarantee success - there are many forces that want to see their own vision of participatory medicine, some because of profit, some who like the status quo, and others who resist change.

I was involved in a tweet chat this weekend with The Arthritis Research Centre and their Patient Advisory Board. This organization and their researchers have found ways to include patients and their views throughout the research process. ROAR stands for Reaching Out with Arthritis Research.

The event featured researchers speaking about their new projects to an audience that included anyone who wanted to listen to the live webinar or be in the in-person audience. That's a big change from the usual way we hear about and use research in our own lives.

They want to know what the audience wants to see and hear at the next eROAR event. So I take that to be an open question. Let them know what you want to hear about.

Let them hear what you want to see studied.

They'll have to use those ideas to get grants to do the research so it may be a long shot but I'm betting you all have at least two questions that you want answered.

What questions do you have that you think are being missed and neglected in your health area?
Do you ever look at research papers and wonder who on earth would have picked ____ as a research topic? I have been saving some doozies that I just won't post and let them see the light of day.

I'll forward all responses from comments to the Arthritis Research Centre, or you can send them direct at their website. It doesn't matter what country you're in. You know researchers - they all share. Your ideas won't go to waste.

ARC researchers, bloggers, and Arthritis Society representative

If you are interested in a definition of Patient Centered Healthcare I have linked to a paper by Donald Berwick that has a good discussion of the concept.

Patient Safety Creates Patient Stories

At Health Quality Transformation 2014 the day started with two patient stories. The story in the opening remarks by Dr. Joshua Tepper demonstrated health care working well.

The other story was an analysis of what went wrong in the case of Greg Price of Alberta and was told by Dr Ward Flemons and David Price, Greg's father. Greg's case triggered a review of processes for managing dealings between referring physicians and specialists or clinics which offer specialized healthcare services in the Alberta Health Care System.

They have been sharing the findings of this Continuity of Patient Care Study with healthcare groups across the country. The gaps in Alberta are in no way unique to that province and this issue was not unique to Greg. This study came about because many Albertans gave co-ordination of care a poor rating in the HQCA (Health Quality Council of Alberta) patient experience survey.

Comments/Recommendations from this session:
Healthcare information is disconnected and laborious to track well enough to see the whole story, even for professionals.

There is a wall between the patient and the Electronic Health Records system. Patients are robbed of the information they need for their own care.

Patients should be able to track referrals made by their doctors to specialists who represent the next step in their care. Closed loop referrals would close the gap.

The motto of the Alberta Medical Association is "Patients First". We need to be clear who is accountable for the patient's health.

We need shortcuts for time sensitive conditions.

David Price had comments to make.

In healthcare there are multiple roadblocks, not a culture of seeking ways to make things better.

We need the key decision makers to listen to what patients need.

For most of the recommendations in the report there has been no change. How do we as patients get the system to listen and change?

If occurrences on his farm went wrong to this degree there would be a Hazard Analysis and all work would be halted. There are contrasting approaches between the food business and the health business. If you say standards are not do-able in the food business you are out of business.

If you read "The Cancer Olympics" by Robin McGee of Nova Scotia you will see similar issues to those in Alberta.

In Ontario my referrals to specialists seem to be lost or mislaid more often than not, so I know it happens here too.

Patient Safety

We all need to be proactive patients. Now I call a week after a referral to a specialists to make sure it arrived safely.

The only good sign to be seen is in BC where Delia Cooper, as the patient representative from Patient Voices with Providence Health Care and the Shared Care Committee was able to "facilitate interaction between family physicians, specialists and patients to develop and implement and processes to streamline care for patients with chronic conditions... This practice has spread provincially and patient referrals to specialists no longer fall through the cracks.

So if they can do it in BC you wonder what the problem is with the rest of the country.