Being a Patient Advisor: One of the Drawbacks

It has been an illuminating time recently on social media, hearing patients and caregivers express feelings of frustration, and of being used and vulnerable.

It's likely they too have been described as "Expert Patients" or "Professional Patients" to their faces, and in referring to people like them. I find the implications of both expressions offensive in their suggestion that I am taking a space where an 'unheard voice' should be sitting.

Just this week in a tweet chat a participant said a _ xy _ _ initiative will have failed if we simply give greater voice to those who already have loud voices, and I doubt he was referring to researchers, professionals, or funders

I did not choose to become a patient; none of us do. I developed a chronic disease 30 years ago that continues to this day and has seriously damaged my bones and joints. I get involved with issues and causes and try to contribute positively to finding solutions or answers that will effect change because I know many system weaknesses and pressure points first hand.

Now that I have developed more knowledge about the health care system I can deal with it better on my own behalf and can also be involved in efforts to improve the situation for other patients and caregivers.

But as Dawn Richards said in her BMJ patient blog this year, the patient is also a person.

In my deepest self I am not a patient, but in any interaction with the health system, that's my assigned persona. Being the 'Expert Patient' that I am considered to be does not mean that I have stopped having my own inconvenient personal encounters with health care.

a) Being knowledgeable does not mean I don't need medical help.
b) Expending my energy as a volunteer does not mean I am healthy.
c) Spending hours every week reading and learning enough to be able to follow and contribute to high-level conversations about system issues should not be something used against me.
d) It is not the job of patient volunteers to make the volunteer pool diverse and inclusive.
e) Not everyone who would like to volunteer is able to. 

It's ironic that those who are least able are often the only volunteers around the table, giving their own time to benefit others.

Another issue is patient engagement as highlighted recently by Isabel Jordan @seastarbattitta. Her story of being profoundly disregarded after working on a project as a team member, and then being ignored can be taken as a lesson in how NOT TO engage patients.

When I began to be involved as a patient partner, or as a conference invitee I was excited and happy just to be there. After years of experience my sense of tokenistic involvement is a lot sharper. One of my older posts is about the Authentic Patient Voice and how much I wonder what the main agenda items at meetings would be if patients choose them without being 'guided' by well-meaning professionals.

It is disturbing to see patients characterized as being responsible for overcrowded emergency departments, as seekers of pain treatment, as pushing doctors into prescribing unneeded antibiotics and tests, and as non-compliant with medications. It only makes sense to involve all members of the team in creating solutions for health system problems, and that team includes patients, who are actually paying for the whole health edifice as taxpayers and as users of non-covered services.

When volunteering as a patient advisor I don't like being called an 'expert patient' or 'professional patient'. Gaining experience with the health care system was never my goal. The work involved in being a patient is a real burden.

If #patientengagement specialists look at me and wish I were an unheard voice, rather than an older white woman who is retired, why don't they work harder at inclusion? They could reach out to communities that include the people they would like to see, and invite them to participate, or at least ask them about methods of participation that would make them comfortable with the process.

If researchers or organizations feel their initiatives will have failed if they simply give greater voice to those who already have loud voices, what are they going to do about it? 

Blaming the people who are helping you now will not attract people with different viewpoints or backgrounds. As a person who spent 20 years recruiting I know it takes time, energy, and innovative strategies to include people you seldom see represented around the table.


Twitter persons who informed this blog post included: @to_dpr @solidfooting, @PFEAMorin, @amaybee, @couragesings, @seastarbattita. I am @anetto

Patient Groups - Hard Work and Lots of Questions

Last week I attended the CADTH symposium in Ottawa as a member of the Sjogren's Society of Canada.

You might wonder exactly what CADTH is and why I would want to attend. The Canadian Agency for Drugs and Technologies in Health (CADTH) is an independent, not-for-profit organization that provides public healthcare decision-makers with evidence about the appropriate use of drugs and medical devices. Patient input is used in deliberations and decisions.

It is becoming much more important in health care to have the patient, caregiver and public point of view and we see organizations making changes because of this.  Sarah Berglas of CADTH pointed out that 5 yrs ago they asked clinical experts what was important to patients. Now they are asking patients for this information.

To make it easier for patient groups to take part CADTH provides templates and sample submissions on their website to help them.

One of CADTH's aims is meaningful involvement of patients and patient groups in the drug review process.

I heard two important comments about patient submissions:

"Patient experience brings the disease to life" -- Fiona Miller

“The review team has often never met a patient with the disease” -- Frank Gavin

At one of the panels at CADTH, Zal Press of Patient Commando suggested that out of 1682 patient groups, only about 18 have the capacity to make submissions to CADTH to be considered by the Common Drug Review.

Questions that came up: 

How much thought is being given to the cost in terms of time and energy that it takes the patient group to do this?

How can patient groups running on a shoestring with few resources do a drug submission effectively?

Is this small number of groups who make submissions a good representation of the voice of patients and the public generally?

What about the idea of independent financial support for patient groups?
Are we asking too much of patient groups? We invest in clinical evidence, why not patient evidence?

Just the facts? 

Dr Ahmed Bayoumi, who is a member of the Common Drug Expert Committee, asked in the panel whether patient groups have the agency to speak for their patients. 

Dr Bayoumi said with patient submissions the decisions made are better decisions - that statement left patients in the room with questions. How do we know that our submissions really have an impact and can possibly change a decision?

Barry Stein of the Colorectal Cancer Association of Canada said he is disappointed that patient experience is most often used to enrich, rather than change, reimbursement and coverage decisions.

Are patient groups working so hard on submissions for drug after drug, just so that the decisions made in meeting can be “better”?

What about the reality that qualitative research and experiential results are heavily discounted in favour of ‘real' evidence from trials and quantitative research?

How often do we call patient experience evidence? Why do we not call it patient evidence? -- Frank Gavin

What terms do we use to describe patient input? Information is a neutral term, but patient information is not seen as data -- Frank Gavin

The panel talked about evidence vs advocacy. We are dichotomizing this form of evidence. How do we incorporate it?

Gail Attara said that understanding the patient perspective is important. "Is a fifth medication for a condition needed?" She answered Yes, if you are a patient for whom the first four didn't work. Also that the patient's individual goals and decisions may not always follow evidence.

Sarah Berglas: Need to work with patients to capture big ideas on acceptability of treatment, "how life is lived, not just survival"

Those of us attending the panel discussion got concrete advice on making our submissions  to the Common Drug Review have more impact and be more useful.

1.     Discussing unmet needs and quality of life is very relevant

2.      Be very specific about therapy, side effects and challenges e.g. efficacy decreases over time.

3.      Include numbers if we have them

4.      Include strong quotes that "hook into people's brains" and illustrate the authentic voice of the patient.

Advice to patient groups on submissions: Be specific in what you include and pick powerful direct quotes. Sarah Berglas, Patient Engagement Officer, CADTH

Ducks in a row

Advice for patient groups from Gail Attara from badgut.org

If patient groups could make submissions in person it would be more satisfying. Why can't patients comment on draft reports like other experts?

Patient group submissions are heavy on quotes, testimony and voice. Patients have the feeling that lived experience can’t compete with clinical data when the end result is up to the funders. Some patient groups wonder how much of  a difference their input makes.

There is a need to develop patient capacity.

I'm always conscious that patients have no strong networks to enable us to stay in touch and connect in between events like CADTH.

HTA provides the facts: ethics judges the facts. All who are affected need to be heard. Are patient values represented in HTA?

There is limited operational (action-oriented) guidance to assist HTA with the evaluation of ethical issues.

Even at the Plenary we heard this question: How do patient groups organize so they can feed into changes within the health care system?

A slide from Dr Ahmed Bayoumi's presentation

The Authentic Patient Voice

The language of patient engagement is starting to concern me. On Twitter #PatientsIncluded is the only patient hashtag that has not been taken and 'professionalized' by hospitals and institutions as their own. 

Patient Experience, Patient Engagement, Patient Relations - all those terms have been turned into hospital silos of professionalism. If you want to call yourself a Patient Navigator you'd better think again. You might be confused with hospital or health system navigators. How about Patient Advocate? - Nope, it's taken. (see below)

"The Department of Patient Advocacy is made up of professionals from various health care backgrounds who possess a wide range of skills and expertise." from a hospital website

"If you are in an Ontario public hospital, you will have access to an in-hospital Patient Advocate through the Patient Relations Department."

If you are a patient then, one who is active and engaged, you don't actually have any term that you can apply to yourself which has not been appropriated. How can patients form a culture when every new term they apply to themselves is quickly co-opted?

There are books to help these professionals too, for example...

A Patient-Centered Approach to Handling Complaints and Grievances... to assist Patient Advocates in managing grievances and complaints more effectively in their organizations.

And courses

"Recognize and understand the key concepts for gathering and using patient experience to design health care improvements"

Keep the term "using patient experience" in mind.

Just last week I saw mid stream results from a project I was involved in. Patients and caregivers did in depth phone interviews including creative pictures to make points about the good and bad in a healthcare issue. A few weeks later the consulting company invited 'selected interviewees' to come in for the final two hours of what had been a day long work group. The consultants, along with their clients, had taken the consultant-chosen ideas and insights and made them into prototypes of solutions. The people who arrived late in the day saw the proposed ideas and were asked for input which the presenters tried to include in presentations immediately after.

As we left we were told that we would see these new initiatives in October, and we would likely recognize our input. It was unsatisfying that they used our ideas to create their version of the patient/caregiver experience, and will be able say "Of course we had patient/caregiver input."

This is not an isolated issue. In a Tweetchat my comment that I am a "third cousin twice removed" of the healthcare system got a large response. It's funny, but the truth in it was what made people laugh.

With PaCER patients are fully engaged in all stages of research

Despite my complaints there are exceptions where there is enthusiasm for the patient movement and the authentic patient voice - The PaCER course in Calgary, which now has a satellite in Ontario is one of those, and I couldn't have asked for more enthusiasm than I received when I contacted the Ontario SPOR Support Unit. 

What I am ranting about is the way in which patients are being streamed into advisory sub committees, the way we are being used as tokens and to help tick off the right box, and the way that the large "disease organizations" have corporatized our voices.

Where is the attitude that patients are part of the team in healthcare, that we are partners? Why are we always asked to participate inside a pre-determined frame?
When will we see co-design of new policies, and ultimately co-production?

Could this be connected to the embarrassing fact that patients can work as hard as anyone else in the health professions, and yet they are the only ones at the table with no badge, and who are not being rewarded for their efforts? Some are quite willing to volunteer indefinitely, and enjoy the process, and yet they still have to make their own way to learn what they need to know.

There are no development courses for patients who want to be active influencers. There are few conferences where they can make connections and learn about up-to-date research, not to mention the lack of access to medical journals that are behind paywalls. The whole health infrastructure is supported by patients as the major stakeholders and yet it is difficult for us to access enough information to fully participate.

We need to support the journey from passive patient to patient leader. 

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?