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EXECUTIVE SUMMARY

Cancer Health Technology Assessment Training Workshop

For Africa & the Middle East

13 -14 November 2015 Atlas Asni Hotel

Marrakech, Morocco

Prepared by Danielle Matia, MPH and Catherina Scheepers, MS

January 2016

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Executive Summary

Access to quality healthcare within the emerging markets of Africa and the Middle East is an ongoing challenge. The financial impact on governments is often considered above the ben-efit and wellbeing of patients. Cancer, a non-communicable disease, has only recently come to be seen as a priority in Africa and the Middle East by the World Health Organization (WHO). Despite the acknowledgement from the global health community, it still battles to receive recognition as a treatable disease; often competing with other diseases such as HIV/AIDS, malaria and TB. Cultural influence and stigma also prevent successful dialogue between communities and decision makers.

It is found that sustainable access treatment models are dependent on the engagement of all stakeholders within the healthcare landscape. Within Africa and the Middle East, The Max Foundation has worked for many years creating treatment access solutions in partnership with key stakeholders. Once people have gained access to treatment, next we have created disease education platforms to bring support and information to families facing cancer. Fi-nally, and perhaps most importantly, we have elevated the voice of cancer patients within the region by working alongside patients and physicians to help form country based patient associations that implement robust advocacy activities in their respective countries.

To further our efforts around improving access to treatment, in November of 2015 The Max Foundation collaborated with health economics expert Professor Panos Kanavos of the Lon-don School of Economics and experienced health systems consultant Ms. Jean Mossman to organize a Health Technology Assessment (HTA) training workshop. The workshop was held in Marrakech to equip cancer advocates from Africa and the Middle East with tools to better understand the role of HTA in health systems. The workshop was based on an already suc-cessful curriculum developed by Professor Kanavos and Ms. Mossman, which has been car-ried out for regional advocates within Asia Pacific with the support from The Max Foundation, Latin America, North America and Europe.

For The Max Foundation, putting on the HTA Workshop was an exciting opportunity to invite members of our Max Global Network from the region to increase their capacities around health systems and economics. In addition, it was a chance to invite and get know new or-ganizations from across Africa and the Middle East who are potential partners. Bringing the regional advocates together provided a forum for the advocates to all get better acquainted with each other as resources in order to strengthen our work on the continent and beyond.

The feedback collected following the workshop was overwhelmingly positive, showing the value of the meeting to the participants. Within the survey administered to the delegates, most delegates gauged themselves as having very little knowledge of HTA and its concepts prior to the workshop. The majority of delegates indicated an increase in their knowledge about HTA afterward. Respondents were asked to assess whether the meeting met their needs, if they were generally satisfied with the course structure and if the training would be

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a useful addition to their advocacy work. Overall, the majority of respondents reported to their satisfaction with the workshop. All advocates indicated that they would recommend the workshop to fellow advocates from their region.

The Max Foundation was grateful for the opportunity to learn alongside the advocates from across the region. By empowering advocates with tools such as HTA knowledge, we hope it will open a dialogue among relevant stakeholders based on factual data towards community health improvements for people living with cancer across Africa and the Middle East.

The HTA Workshop was made possible thanks to support from industry partners: Roche, the prem-ier sponsor; Bayer, the original sponsor; and Novartis, Pfizer and Janssen, the primary sponsors.

Meeting Objectives

The Heath Technology Assessment (HTA) training workshop aimed at providing patient ad-vocates with an understanding of HTA and its role in local health authority decisions on providing access to new technologies and treatment.

The following results were envisioned:

• To introduce and discuss health technology assessment and its concepts: what it is, its role in access to cancer treatment and the variations on how it can be applied.

• To help advocates understand how access is affected by clinical results and cost ef-fectiveness, including data modeling methods.

• To help advocates understand how patient organizations can collect and contribute patient evidence to the HTA process.

• To introduce access models including risk sharing and reimbursement schemes. • To help participants understand how to apply the acquired knowledge at a local and

national level.

Participants

The following 25 patient advocates who are leaders in their countries across Africa and the Middle East were selected to attend and benefit from the HTA training.

Country Organization

Kenya Henzo Kenya

Morocco Association des Malades Atteints de Leucémies (AMAL)

South Africa CML SA

Ghana CMLAG

Togo ONG APSBES/Diligence group

Egypt CanSurvive

Egypt CanSurvive

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Morocco Lalla Salma Foundation

South Africa People Living with Cancer

Turkey Pembe Hanim

South Africa Cancer Association South Africa (CANSA)

South Africa Campaigning for Cancer

Uganda Uganda Women’s Cancer support Organization

Kenya KENCASA (Kenya Cancer Association)

Cote d’Ivoire AILC Alliance Ivoirienne de lutte contre le cancer

Rwanda Breast Cancer Initiative East Africa Inc. (BCIEA Inc)

Zambia Zambian Cancer Society

Cameroon WHP Cameroon Baptist convention health services

Nigeria Sebeccly Cancer Care

Ghana Reach for Recovery

Mauritius Breast cancer care

Mauritius Link to Life

Algeria Nour a Doha

Cameroon FENARAF

Saudi Arabia Saudi Cancer foundation (*) unable to attend due to scheduling conflict with local planned events

From the invited 25 delegates, 24 were able to attend.

Two observers from pharmaceutical companies were also in attendance.

Training Structure and Content

The two-day patient workshop was developed by Prof. Panos Kanavos of the London School of Economics and was an adaptation of his full-time course. It was co-facilitated by Ms. Jean Mossman, who has worked with several cancer patient advocacy groups and assisted the London School of Economics in developing programs to train patient groups in the im-portance of understanding HTA processes.

The structure of the workshop was a combination of lectures, small group exercises and plenary discussions.

Prior to the Workshop Surveys where distributed to participants to gauge the current state of access and reim-bursement models within each country.

The results of the survey allowed the trainers to research different health care systems and target the training content to issues relevant to specific countries.

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Day One Discussion on the first day centered on introducing key concepts and terms used in health technology assessment and economics. These concepts served to lay the foundation of what HTA is and why it is relevant to cancer patients. HTA is a tool that can be used in understand-ing how new medical products are priced and the parameters used by governments and stakeholders in decisions between clinical effectiveness vs cost effectiveness.

An important factor that was highlighted was how patient advocates can bring their voices to the HTA process and take part in the decision making process. Participants in the work-shop were continually involved through feedback and group discussions and encouraged to share experiences and ask questions.

Prof. Kanavos shared the following key messages:

1. That HTA is not without challenges and controversy. 2. Most of the controversies focus on the role of HTA in decision making and methodol-

ogy, priority setting and the role of stakeholders. 3. Various types of evidence are considered by an HTA board and extensive cost benefit

analysis are considered. 4. Cost effectiveness and cost utility analyses are most often considered appropriate

approaches for assessing relative benefits and costs. 5. HTA bodies usually assume three distinct roles such as advisory, regulatory and co-

ordination.

Participants were introduced to how HTA is used by different European countries and how each country views HTA through different lenses. For example, it is viewed through the lenses of cost effectiveness in the UK; while in France, it is viewed for its additional medical benefit.

It is noted that, over all, most countries do not pay serious attention to items such as produc-tivity gains or costs to the patient. It was also explained that government officials view HTA as a tool to decide on access to new treatments or technologies based on relative cost or benefit. Patients on the other hand want access to effective treatments, timely decisions and contribution to the decision-making process.

An exercise at the end of the day’s program required participants to identify three benefits of a new treatment that patients would consider most import. Participants then had to indi-cate a perceived value for each variable. The exercise focused on demonstrating how a pa-tient’s value on innovation does not always match the HTA assessment. From the outcome of the exercise it was clear that the patient’s perspectives were more focused on the added benefit to the quality of life while the HTA board focused more on cost benefit.

Day Two The second day focused on preparing advocates to participate in a mock HTA review board exercise.

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Training and discussions focused on understanding:

1. How patient groups can be involved in HTA. 2. Why patient input is important. 3. Reasons why patient organizations should get support to participate in HTA. 4. How to contribute to HTA and other reimbursement decisions.

Ms. Mossman illustrated how patient organizations should reframe the discussion by start-ing with the person. She stressed that advocacy groups should be able to explain what pa-tients want from HTA. Groups should use evidence based data to illustrate their point and not only the emotional distress patients feel.

Participants were introduced to the concept of reimbursement to better understand:

1. How reimbursement policies are set. 2. How formularies are established in each country. 3. How drug reimbursement schemes are set and what the current trends are.

Discussions focused on the concept of reference pricing, how it determines maximum reim-bursement and limits competition. Participants discussed risk, and risk-sharing agreements, how risk-sharing works in practice and its advantages and disadvantages.

Good negotiation skills were discussed. Participants were introduced to the key to success in negotiation such as understanding of:

1. Partisan perceptions. 2. Adopting a frame of mind for understanding by assuming partisanship exists on both

sides. 3. Seeking understanding and showing understanding before seeking to be understood. 4. Creating new perceptions rather than battling old ones. 5. Encouraging mutual trust by acting in a trustworthy manner.

Through these discussions, advocates learned the steps for effective negotiation, goal set-ting, how to define what will qualify as success in a particular negotiation and the compo-nents of a successful negotiation.

Following the discussion, participants’ learning was tested in a mock appraisal exercise wherein each of the groups were asked to present their case in front of a mock HTA board. They were tasked with representing key aspects of:

1. An illness which has an impact on a patient’s daily life. 2. Define which of these impacts are the most difficult to live with for the patient. 3. The disease’s impact on survival, quality of life or both and the relative importance of

one over the other. 4. The benefit that the technology (treatment) brings to patients.

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A critique of the group presentations was made by both the mock HTA panelists and the observing participants. Feedback focused on improvements the groups should consider, and suggestions on approaching challenging government officials.

Conclusion and Recommendations

From the introductory presentation on the first day of the workshop through the discussions that followed, it was clear that participants could be divided into three categories:

1. Those coming from the Middle East countries such as Turkey where HTA is widely used. Health authorities there have made decisions which led to a well thought out healthcare system, providing almost universal access to care.

2. Those from Southern Africa where some concepts of HTA are being used. Advocates there are familiar with many of the terms and understand the challenges of advocat-ing to government bodies for access to new treatments.

3. Those coming from countries of Sub-Saharan Africa where HTA is not being used. Advocates from that region were not familiar with the terms and contents of HTA.

To facilitate improved dialogue and understanding, participants noted the need to bring both advocates and government officials together in similar training.

Participants from Francophone countries strongly urged both Dr. Kanavos and Ms. Mossman to bring this training in French to their countries.

Several participants expressed their gratitude for being involved in the workshop and for the provision of such a valuable tool. Several individuals expressed interest in follow-up training to extend the base of knowledge and to be able to successfully apply advocacy strategies locally.

Advocates who participated were made aware of the importance of patient perspective in the decision making process and were encouraged to engage with industry. By empowering advocates with tools such as HTA, it will enable them to dialogue with the relevant stakehold-ers in a manner based on factual data. Creating this platform can lead to the negotiation of healthcare access that can benefit all parties.

Challenges

1. Language. Although all the participants were aware the workshop would be carried out in English, several participants preferred to make their remarks in French to better ex-press themselves. Fortunately, we were able to accommodate on the spot translation. Planning for the presence of a translator should be part of any workshop where a bulk of the participants speaks a language other than the presenter.

2. Workshop duration. Because of the volume of material covered, some participants would have preferred more time. They recommend that future HTA workshops include

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an extra day to allow for more time spent on exercises and mock panels. This roleplaying part of the workshop was highly valued by all participants.

Annexure A

HTA Workshop Participant Feedback Summary

Each attending delegate received an evaluation form following the workshop. Twenty-five surveys were returned. The following represents results of that survey.

Meeting Content and Impact

Delegates were asked to indicate their knowledge of HTA processes prior to and after the workshop on a scale of 1 – 5 (1 = no knowledge of HTA, 5 = having a great deal of knowledge.)

Most delegates gauged themselves as having very little knowledge of HTA and its concepts prior to the workshop. The majority of delegates indicated an increase in their knowledge about HTA afterward.

Respondents were asked to assess on a scale of 1 to 5 (1 = not satisfied, 5 = very satisfied) whether the meeting met their needs, if they were generally satisfied with the course struc-ture and if the training would be a useful addition to their advocacy work. Over all, the ma-jority of respondents reported to be satisfied with the workshop. The chart below shows how respondents rated their level of satisfaction with the training and degree to which they felt the training met their needs and relevant to the scope of their work.

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Reported satisfaction with course structure and usefulness in meeting advocacy work

The general presentation and ease of understanding the speakers were measured on a scale of 1 – 5 with 1 being very dissatisfied and 5 very satisfied. The measured values indicate the respondents found the presentations informative and easy to understand and that the ma-jority were very satisfied.

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A review of delegates’ written response shows that over 60% reported finding training on negotiation skills to be very helpful and informative. Delegates also mentioned that the in-teractive group discussions, group work and the mock-panel and role play were important features of the training.

Travel and Accommodation

The event was hosted at the Atlas Asni Hotel in Marrakech. The hotel was chosen because it met all sponsor criteria and offered the best value.

Delegates were asked to rate the travel, accommodation, facilities and catering as poor, sat-isfactory, good or excellent. (Poor = 1, Satisfactory = 2, Good = 3, Excellent = 4.)

It is important to note on the topic of travel that a major airline called a strike prior to the commencement of the workshop which resulted in the rerouting of flights for some dele-gates. Despite this unforeseen situation all delegates arrived as per scheduled arrangement.

From comments on improvements, it is clear that more time is needed for the presentation of this workshop. The workshop and facilities were well received in general and most of the delegates stated that they will be able to implement the acquired knowledge within their own advocacy strategies. All advocates indicated that they would recommend the workshop to fellow advocates from their region.

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Event Pictures

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