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

Patients Included: A Charter for Conferences

The Patients Included Charter for Conferences has just been published today, May 1. This post describes some of my feelings about attending conferences as  a patient.

Before attending Medicine X at Stanford University in 2014 I had only been to one medical conference other than those put on by the Sjogrens Society of Canada of which I am a member. 

Once I returned home from MedX it seemed like a natural progression to be involved in and learning in a more public way. After years of support groups, blogs, Twitter and searching for knowledge every day, the MedX experience was a catalyst. Seeing so much enthusiasm for the patient voice and for change in healthcare made me feel that my thoughts and opinions were not fringe ideas any more; they resonated.

After MedX, last September there was a Patient Experience conference that I remembered from the year before - they were widely criticized through social media because there were no patients, either in the audience or as presenters, despite the name "Patient Experience." In 2014 they added a strong patient advocate to the program planning and invited patients to attend and to speak. No one in attendance complained about patients being there, and this year they seem to be following the #patientsincluded model.

The benefits of conferences as stated by a Healthcare Conference company : a chance to "engage in open honest discussion, networking with peers from across the country and leveraging knowledge from leading experts in this field"

The benefits and knowledge available at a conference can be put to good use by any of the team members involved in health care, including patients. In fact when the information learned is useful and novel, it gets shared at the speed of social media through tweets, blogs, chats and even in conversation.  As an example, less than  a week after the CADTH Workshop about Critical Appraisal in Saskatoon I passed the appraisal tools on to my partners in a PaCER research project and used it to inform my opinions in a Health Care Social Media Canada (#hcsmca) tweet chat. That's a speedy way to get it out of the silo.

I think there is no better way of mobilizing knowledge than to disseminate it widely. As Jack Andraka said at MedX we need knowledge democracy and to me that means more than just the facts - patients need lived experience with the healthcare spectrum in an atmosphere where they are people first and patients second.

More than meets the eye to patients

Last night I had dinner with a group of active patients and for interest I asked them for their job titles. This is what I got:

I am a patient  and have a PhD in Cellular Molecular Pathology.

I am a patient and a Speech Language Pathologist.

I am a patient and an IT Professional on the IBM Watson Health Team.

I am a patient with 20 years of experience in qualitative research.

I am a patient and a senior project manager in IT.

There is always more than meets the eye.

The impetus to have patients included in conferences has been part of the engaged patient movement for years, with Tom Ferguson laying the groundwork, with Lucien Engelen creating a logo to be used where patients are included, and now with Andrew Spong and an international group working together to create "A Charter For Conferences." It has been introduced on Friday May 1 and this blog fully supports the Charter.


To find links to more blog posts about the Charter watch #patientsincluded on Twitter.